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Having a sibling on the autism spectrum

Organising family life

The organisation of family life can be complicated when a family member is on the autism spectrum. Different aspects of family life, including routines at home, going out, mealtimes, family holidays and the organisation of the family home, were discussed, with the overriding emphasis placed on need to try to maintain routine and reduce anxiety for their siblings.

“Some of the time we were treading on egg shells”
The greatest constraint on family life, for many people, was the importance of sticking to the siblings’ routines. People with autistic spectrum disorders (ASD) may depend on routines and rituals to minimise their anxiety. A break in routine can cause great distress, which, in turn, can complicate family life. Several people said that, as a family, they tried to accommodate their sibling’s routine. As one person said, “It was just the way everyone has to think of him and put him first, before anyone else, because he needed it”. This could cause tensions and pressure within some families leading to arguments. Some people reflected on how they learnt to put their brother first, after some initial resistance when they were younger.

 

Trying not to upset their brother triggered a lot of rows between other family members in Alison...

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Age at interview: 50
Sex: Female
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But of course, our family was much larger, than most other families that I knew, so it might have been down to that. Yes, we were a bit, some of the time we were a bit treading on eggshells to sort of make sure that nothing happened to cause any upset for my brother which would then, often then, you know, triggered a lot of rows between the rest of the family if, you know, so there was quite a lot of back treading on eggshells and things to try and indulge his routines and other requirements. But every now and then it would get too much for somebody and they would get upset and start, shouting and so on. And that could have been any of us. Might have been my parents. My Mum sometimes got quite upset. Might have been me. I sometimes got upset. My other brother sometimes got upset. I don’t remember my younger sisters getting that upset. But yeah, so it did make the sort of emotional relationships, I think, more fragile than they might have been anyway. 

 

Sophie says “you pretty much go out your way to make him comfortable with home life, it makes it...

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Age at interview: 20
Sex: Female
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It’s quite tough and very emotional. You know, your emotions, you don’t know. One day is never the same. You know, every day’s different and you’ve just got to take that day, each day as it comes, because you know, every day [brother’s name]’s got a new routine that he has to do before he goes to bed, and you’re constantly adapting yourself. Like I can’t wear nail polish because [brother’s name] doesn’t like it. That’s something he can’t cope with. So, you know, you’ve got to go round his needs rather than your needs. You know, you’re just shaped round him, and I think, you know, that in itself is quite tough because some people just turn round and go, “Well I’m not doing that. I want to do what I want”. You know, I learnt the hard way by doing that. I was initially like that. But you learn, you quickly learn that that’s not the way forward. So you pretty much go out of your way to make him feel comfortable with life and the home life, it makes it easier.

 

Steph says that she and her family “work round” her brother’s need for routine.

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Age at interview: 26
Sex: Female
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Because, because of the level that [brother] is at. He’s not he’s not high enough level to be able to kind of rationalise, well alright I’m going to so-and-so’s house. Mum says I’ll be okay, Steph says I’ll be okay. I know what I’m going to do. But he’s far too high a level to kind of think, to kind of not be aware of where he’s going. He knows exactly where he’s going, exactly what he’s doing. And his anxiety will raise as soon as it’s something different and because myself and my family want him to be calm and settled and happy, we have to work around that all the time, because it’s unfair not to, because if not that’s when he becomes distressed and I don’t think that me, mum, Dad could live with him being distressed because of something that we wanted to do.

 

Jenni had to go to bed before her younger brother because he would get “cranky” if she was still up.

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Age at interview: 18
Sex: Female
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But then again when I was younger, I had to go to bed before my brother, which when you’re about eight you don’t really want to be going to bed at the same time as your six year old brother. But I kind of had to. And …
 
Why was that?
 
Because he’d get cranky. If I wasn’t gone to bed when he was gone to bed he’d just flip. And so I didn’t get to see much of my parents either. So I’d probably see my dad from. I think it was probably from about five, half five until seven and then I’d go to bed. And that would be it. That would be pretty much all I saw of him all day. So I started getting up in the mornings, quite early in the morning at one point to watch Walking with Dinosaurs, so I got to see him. My family has a thing about dinosaurs. Like my brother really likes dinosaurs and I really like dinosaurs. I don’t even know why. So I’d kind of see my parents probably wanted just adult time, just to sit and watch TV or whatever and not have annoying small children running around. So I can’t say I blame them. But I was very grateful when I was finally allowed to like, I’d have to go to bed, but then I could come out again an hour later when my brother was asleep which was good. I was quite happy with that because it meant I didn’t have to just go to bed at a ridiculous time.
 
 

Sophie talks about how it would be “amazing” if her brother did not feel anxious.

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Age at interview: 20
Sex: Female
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Yeah, because, you know, just for him to get out of bed, and say, “Oh I feel happy today. I don’t feel anxious or anything”. You know, that would be amazing for me and my Mum. That’s the least we’d expect from it. Do you know what I mean? Just trying, just to get him out of bed, and happy, I think is our ultimate goal any way, but, you know, if he could find employment, or friends or anything like that. That’s just bonuses really. As long as he’s happy and he gets out of bed and he’s doing something, whether, you know, it doesn’t necessarily have to be college or employment, but you know, if it’s walking next door’s dog and he’s happy, that’s all we can ask for really. But I think he wants more, we’ll have to do it gradually.

 

Katherine’s brother can create a barrier in their family as “it’s all on his terms”.

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Age at interview: 21
Sex: Female
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When he’s bad. When he’s in a low mood or something or locked away in his bedroom because he won’t see my dad or I, he won’t interact with us, he lives through my mum. So she’ll be supporting him but at the same time as her being his support, while he’s letting my mum in, he’s also putting up a barrier in between my dad and I. So he kind of has decided this barrier for the family, or a wall within the family and it’s very much on my brother’s terms. And when he’s down my dad doesn’t like it because of the effect it has on my mum and I also don’t like it for that. But he has more trouble with it, because, I don’t know, the distress that we can see that he’s causing my mum is bad. So when [brother’s name]’s happy the family is better. It’s nice to have him round the house again, but yes, the family’s mood is quite determined by my brother.

“My parents didn’t want to take him out”
Several people talked about the difficulties they had going out to different places with their siblings. Leaving the house to go to the shops or on family outings could be difficult. Again this was often related to their sibling’s strong need for routine and dislike of unfamiliar places. Their siblings often had rituals and obsessions that could be very constraining for other family members. As a result, outings were often focused on the siblings’ interests or were age appropriate to their sibling, which could be difficult for them. 

Others explained that going out wasn't easy because they worried about how their sibling would behave and how other people present would react towards him or her. Some people stopped going out as much because of their siblings’ ‘meltdowns’, but this suited some siblings who were very happy to stay at home. 

 

Marti explains that changing the route they take in the car can result in upsetting her brother.

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Age at interview: 20
Sex: Female
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Very ritualistic. Comes downstairs. Disney channel. We have to drive certain ways in the car, or he’ll get upset and pull our hair, which is very nasty. And he’s not grown out of that one yet. When we were little he would slap but with age his grown out of that one. He does grow out of a lot of rituals, but it’s just when [laughs]. And unfortunately some of the bad ones still remain. But he gets better. And another one is turning up the telly really loud in the morning which hasn’t been a nice one, but he’s coming out of that. So rituals aren’t forever, at least some of them.
 
And do you do anything to help him get out of these rituals?
 
There’s not really anything we can do, because if you try driving that certain way in the car, he might not do the ritual then, but it would build up inside of him, and when we get out the car, he might pull hair. So we don’t really want to get our hair pulled. So we can’t really help him get out of that one. It’s just driving that way once every five months to see if he’s forgotten about it. We tell him off for turning the TV, turning up the TV, he’s got a reaction. He laughs at the reaction. It spurs him on to keep doing it, because he’s got a reaction. There’s not really a lot we can help him, because when you’re so set in your ways with a ritual you can’t really get out of it or help him. Just wait till it goes away.
 
 

Ellie did not enjoy going out with her brother when she was younger because she “didn’t want to...

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Age at interview: 17
Sex: Female
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What do you think other people think about him then?
 
It depends what he’s doing. I remember, we were in a shop once and there was an elderly couple. They don’t know everything about it, but someone said that he just seemed like he had half a brain. And it was quite insulting because he was only about six and I was about ten and you just you don’t say that about people anyway, but then the person behind the shop like told them he’s autistic, and I don’t even know him. And it was nice to know that some people do know. But I don’t really know what people think of him, but he used to like fall on the floor and start kicking off and people just walk over him. And I guess that was why I didn’t really want to go out, because I just didn’t want to see people’s reactions. So I think people kind of think he’s really different and like odd, and they don’t really think that it’s disability. They just think he’s like either playing up or being strange I guess.
 
And how do you feel about all of that?
 
Oh well that’s why I was rather protective. It really upsets me, and it gets me angry that anyone would say that about anyone really. I don’t think it’s right just to say anything about anyone like that. But I suppose it’s harder with autistic children because they don’t look any different. They look normal then they can be walking along and all of sudden twirl around like a princess It’s, if he’s a boy at like five foot something, it’s kind of strange. It’s funny to me, because I know that he’s doing it because he’s being him. But no one else will know and they might think he’s a bit strange but I guess that’s what I was worried about. But then I learnt that if people are going to see him like that then they’re not really worth thinking about at all.
 

“We would need a holiday after the holiday”
Going on holiday was another aspect of family life that could be less than straightforward. The disruption to routine could be difficult for their siblings to cope with and holidays took a lot of planning. The destination was sometimes related to the siblings’ interests, again to minimise tensions, and a few people said they were unable to travel abroad. One person said that her family could “never take [her brother] on holiday” while another said that her brother insisted that they do the activities he likes because his benefits had contributed to the cost of the holiday. Going on holiday with extended family members who do not understand ASD was also difficult.

 

Graham recalls how a family holiday was disrupted by his brother’s behaviour.

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Age at interview: 24
Sex: Male
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No a good example is when we went to the Norfolk Broads when we were about…I must have been about 15, 16 I think and we’d got there and Richard had forgotten one of his consoles. And he screamed and shouted and wouldn’t get on the boat. And then my parents eventually managed to, because my dad was saying, well I’m going to have to drive home like three hours, four hours and go and get it. And my mum was like, no, no, no. We managed to reason with him, that they went and bought him something at a shop to kind of calm him down. And I remember that, and that was like a perfect example in my recent memory of like when things have been difficult and then you have to just kind of reason with him, which is normally quite difficult to reason with him. But yes... but something like that I wouldn’t go home and like talk to my mates in depth about it or anything at all.

 

Lucy discusses how family holidays always involved visiting train stations at her brother’s...

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Age at interview: 18
Sex: Female
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Yes, so he’s also got this love for trains also, so we always end up going on holidays, where like we spend half the time going to steam railways, which now that I’ve, now since I turned sixteen, I stopped going on them. I was like right, I’ll stay at home. I’m not going to go to any more steam railways or museums, all that lot. So I just like right leave that away now, I don’t have to deal with that any more. 
 

Amy explains that a family holiday with relatives was complicated by their attitudes to her brother.

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Age at interview: 17
Sex: Female
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Okay and what do you think that other people think about him?
 
I don’t know. I think, because all of the family know about him, but I think the ones, that, like obviously like cousins and aunts and uncles and stuff don’t, don’t understand as well as we do. So like when we went on holiday there were a couple of times when they were like, “Oh just, just play nicely, Harry.” Sort of thing, and it’s like well that’s just how he does play, that’s how he is, sort of thing. But, everyone’s accepting of him. There’s... but they just, because they’re not used to living with him, they don’t understand as well, I don’t think.
 
Okay and what do you think about that or how do you feel about it?
 
I don’t know. I think, I don’t want to say, “Oh don’t tell him how to do this, how to do that”, because not my place to say that to them really, but I just think well he’s only doing that because that’s how he is, that’s what he does sort of thing, but I just sort of get on with it, just… I don’t know.
 
 

Damian explains how family holidays have to be carefully thought out.

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Age at interview: 29
Sex: Male
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Oh definitely. We would rarely go on holidays, because holidays were always quite difficult with [brother’s name]. We always had to think about, we always had to think about what we were going to be doing so not to break his routine or the structure. Yeah, constantly, constantly sort of thinking ahead. You know, most families would go on holiday to Disneyland. That was never a possibility with [brother’s name]. It was too much to think about, too much to plan. We would need a holiday after the holiday yeah...
 
What kind of things would you have had to plan, if you were to go on a big holiday like that?
 
Well we’d, I think taking him out of his environment was probably the biggest challenge. Getting him used to a certain place would take time... 
 

A couple of the people said that they no longer wanted to go on family holidays. For one, this was because she was bored of doing the activities her brother wanted to do. Another who described herself as a 'control freak', found it difficult to deal with her parents being so disorganised.

“Meal times will probably cause an argument”
Some people said that mealtimes could be difficult. One said this was because the range of foods her brother ate was limited due to his sensory sensitivities and she would feel “kind of rejected” if he didn't eat the meals she prepared. Another felt that dinner time should be a social time for the family but her brother didn’t want be part of after-dinner family chats. She said that “everyone misses out because we’re not spending time with each other”. Mealtimes could also be difficult because of the need for routine. 

 

Eloise says that most of her family’s arguments happened at mealtimes.

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Age at interview: 18
Sex: Female
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Yes, meal times are quite difficult, he has a very, similar to the, the sensory kind of, doesn’t like loud noises, his range of foods that he’ll eat is very small that can be quite frustrating for whoever’s cooked. Because even though if my mum’s cooked or dad’s cooked and he doesn’t eat it, I can kind of see why. I can be like oh he doesn’t like that, that’s why…. But if I’ve cooked and then he doesn’t eat it, I feel just as kind of rejected as they do. That can cause quite a lot of, it probably does cause the most arguments, because then they’ll, we try and then consult him about what’s going to be had for dinner so that he will actually eat because he doesn’t eat enough. So and then he won’t know and then it all gets quite fraught [laughs]. But, so that’s quite, yes, meal times are probably the most, we don’t really argue as a family, but mealtimes will probably cause an argument. But he does like cooking and he makes very good bread. So maybe he’ll start cooking and experimenting with food and thus eat more things. 

 

Jenni’s brother becomes “cranky” if she does not attend family meals when she is in the house.

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Age at interview: 18
Sex: Female
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Yes, if I’m in the house I’m supposed to have dinner, otherwise he’ll get cranky because like he knows everyone’s around, but not everyone’s around. Over Christmas it’s like he’s, it’s really odd like, like autistic kids aren’t really supposed to have imagination, so he shouldn’t really be able to like believe in Santa. But he seems to. Because a couple of years ago I was babysitting next door over Christmas on Christmas, well it wasn’t Christmas Eve, but it was his Christmas Eve and he would not settle. Like he goes to bed at about 9 o’clock when he’s here and I was out until about midnight and for those three hours he was just really, really where is she? She’s not in the house? I’m not going to settle. I’m just going to cause as much problems as possible, because obviously he seemed to think that Santa wouldn’t come if I wasn’t, if everyone wasn’t in the house. It was really strange. So I’m now just not allowed out over that time.

“You couldn’t leave any lotions in the bathroom”
The organisation of home space and belongings was something a few people talked about. Some of the siblings were territorial and would dominate a particular room in the house, such as the living room. Katherine’s brother would retreat to his room for long periods of time and only speak to her mother. This could create an atmosphere throughout the house. One person recalled feeling stressed when she was growing up because of the number of support workers coming into her home for her brother who needed a lot of care. She found this disruptive and intrusive.

Other people had to hide things like CDs, DVDs, liquid soap and toothpaste because their siblings would destroy them or make a mess. While some people were used to how things were, a couple said they would like to separate themselves more from their families. One said that she “can’t wait to move out” and get away from her brother “because he distresses the family”. However, others felt very strong ties and responsibilities towards their family (see ‘Thinking about the future’).

 

Ellie found home life very difficult when a lot of carers came to the house and “it was just...

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Age at interview: 17
Sex: Female
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And it was really hard having people in the house looking after him. Because they used to come in and care for him. And that was just hard. Because it just breaks the privacy thing, because those people were here and it felt different when they didn’t look after him properly. They wouldn’t wash his face properly. It’s just the little things that really got to me.
 
And when did they start coming in to look after him?
 
It must have been about nine years ago I think. When we lived here for a year and he must have been about four. And we just needed people in the mornings to get him dressed or some people in the after, evening to look after him if my mum went out, it was just constant. It was at least four times a week and then just, it was really annoying at times, just people coming in and talking to you when you want to do homework.
 
Oh I can imagine. It just felt like your space was being invaded?
 
Yes. Because, although they were lovely people, I didn’t want them coming in my room to talk to me if they were bored. Because he’s really independent, he watches DVDs and that’s him, he doesn’t need social interaction [small laugh]. 
 
 

Marti had to move to a new area and attend a new school in order to accommodate her brother’s...

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Age at interview: 20
Sex: Female
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We had to move where we are now when I was about eleven. And because he had to go to a school for people with disabilities because we were quite far out he would have had to have a got a taxi quite early in the morning to get here every day. So we had to move when I was quite young. Luckily it was at the transition point where I would be going to secondary school. So it fitted in quite well. So we had to leave where we lived to come here, because of the autism.
 
And how did you feel about that at the time?
 
I wasn’t really bothered. I didn’t like the school I was at. So a new school was quite appealing. It was quite a small town with nothing going on. Now we’re in a much bigger town, and we didn’t, other than a few members of family we didn’t have anything left in that town. It wasn’t a terrible change, it was for the best. It was better schools for myself here as well.
 
And did you have to leave all your friends?
 
Well my best friend had already moved away, so I didn’t feel like I was leaving friends behind, that was never an issue either.
 
 

Marti’s brother smashed their television and they can’t leave any bottles of liquid in the bathroom.

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Age at interview: 20
Sex: Female
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Well we’ve had to put a screen on the television because he has smashed television, the plasma inside and we think, he didn’t tell us this, but what we gather is he smashed the remote on the screen and broke the telly, so now we have film cover plastic over the telly to try and stop that happening again. We have, we can’t have bottles or stuff with liquid in like toothpaste or the hand gel in the bathroom because he will tip it away. He sees something so he will tip it or spill it. He does put water down the sink now, but he it used to be just spill it. If there’s a glass of water, just knock it over, spill it, get a reaction. He gets a thrill out of that; hiding things that we don’t want broken. I’ve lived all my live hiding like my games consuls, my gameboy. He had his own Gameboy. We had to take it away, because he would get angry with it and throw it down the stairs and that’s led to a few near misses. If you don’t know he’s about to throw it down the stairs and you’re walking past the stairs, you had a risk of being hit by a flying Gameboy. So we’ve had to hide a lot of things that we don’t want broken. 


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Last reviewed August 2018.
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