A-Z

Having a sibling on the autism spectrum

Relationship with sibling

People described their relationships with their siblings. They talked about emotional and practical sides to their relationships and how these changed over time. People found similarities to typical sibling relationships, but also considerable differences, such as the level of responsibility they felt for their sibling. 

“It’s like a normal brother and sister thing really, but without the speech”
Several people said that they had typical sibling relationships. Their sibling could annoy them to bits, but they were also very close. Many acknowledged that while their relationship is different in many ways than other sibling relationships, it was “normal” to them. Their sibling’s behaviour could be unusual or unpredictable but they had grown up with them and so “had to get on with it”. 

 

Graham is pleased to have a close relationship with his brother; unlike a lot of his friends.

Graham is pleased to have a close relationship with his brother; unlike a lot of his friends.

Age at interview: 24
Sex: Male
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Well what, through my whole life really? I don’t really know where to start. There’s been a lot of good and bad times I’d say. It’s something that I wouldn’t want to change if I could go back and change and have a different brother as such. But yes, I mean being with Richy is amazing, I think, it’s a different experience to what you can get normally as having a brother. It’s... because he’s just constantly there, he almost needs your help, so he’s very reliant on you. It really means that you build a strong relationship I’d say. When my parents go away, as in, my Grandma wouldn’t really like looking after him without me being there, for example. So again, growing up with him, I know him kind of in and out in that sense. I know exactly how to wind him up when I want to and how to calm him down when he needs to calm down and things so...So that’s been a nice thing I’d say, where I know that a lot of people don’t, a lot of my friends don’t have a good relationships at all with their brother. Even though they can still go down the pub and have a drink. I’d say, I mean I can’t, well maybe more so recently it’s been possible to do that, but I haven’t been able to grow up and share certain things with him, like talking about girls and that, but at the same time we’ve been able to have different kind of relationship experiences together, which I think is just as important in certain ways. 

 

Eloise thinks most big sisters find their younger brother a pain, but she couldn’t understand why...

Eloise thinks most big sisters find their younger brother a pain, but she couldn’t understand why...

Age at interview: 18
Sex: Female
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It was, it was a mixture. I mean obviously every big sister finds their little brother annoying, but there were times when I just didn’t understand why he wouldn’t put the yellow tee-shirt on or wouldn’t, wouldn’t...You were trying to get him to just do something and he wouldn’t do it, and he didn’t know what and he was getting very upset over something that was very tiny and that he...There didn’t seem to be any explanation about why he would get so upset when the Hoover was turned on, or it was just didn’t know...or why, there were certain smells that he just, or why he would suddenly appear very rude or...which again caused problems at school and not so much nursery people when people of 3 or 4 it doesn’t matter so much. But at school he didn’t, the teachers would call each other by their first names, but the students were meant to call them Mrs or Mr and he just didn’t…. I mean I don’t think it’s that surprising that a 5, 6 year old doesn’t pick up on that, but everyone else did and he didn’t, and so he just, he couldn’t, he just, yes, there were just things that he didn’t understand why... why can’t you see that? As an older sister it was just like, ‘just be quiet and get on with it’ kind of. 
 
So when you were growing up before the diagnosis, did he make you feel embarrassed? How did you feel about him?
 
Generally he was just my little brother, but I didn’t, especially as I got to about, I don’t know, 12 or so, 12, 13, and he would have been 6 or so then. And he would, if my friends came over, he didn’t know that he shouldn’t necessarily hug them and like and there were things like, he would, he didn’t think, yes, he’s not, he will happily hug people and stuff like that, which isn’t. He doesn’t have a problem with that, but equally he doesn’t necessarily know who he should and shouldn’t. Well he does more now, but when he was, when he was younger he didn’t and he would hug and kiss people he’d not met before. That was embarrassing. And going into shops and he’d managed to pick up the most embarrassing item he could. Not that was doing it deliberately, but like if there were things that he could pick up, picking up like women’s underwear probably wasn’t… [laughs]. But things like that, but, I mean he was, we still played and stuff like that. I think when I was, when he was a 2, 3 year old what I found most annoying was that there were things that me and my brother had had for years. We’d never broken them when we were younger and he got, he used to get very angry, and very frustrated, more than just toddler tantrum type things, and would break things that we’d had for years and years. So that was quite… I used to get really annoyed about that.
 
What sort of things. I mean did you get upset, things that you know were attached… things like teddies or…?
 
Yes, it was, I wasn’t, yes things like teddies or story books that we’d all had and he’d managed to destroy in two minutes only. But it was, I think a lot of that we saw as just the fact that he maybe had a different temperament to us or he was the youngest. But at the same time... well, that’s how my mum would, my mum would just say, “Oh he’s only little.” Or something like that. Not all the time, but… But I saw it as I was younger than him and I didn’t break it kind of thing, but…
 

In terms of spending time with their siblings, people talked about different things including “just hanging out”, eating, tickling, playing computer games and going shopping together. Some younger siblings were in residential schools and a few people found visiting them there “a bit upsetting”. They preferred their sibling to come home. 

 

Steph is very close to her brother, who has “profound autism and a language disorder”, and enjoys...

Steph is very close to her brother, who has “profound autism and a language disorder”, and enjoys...

Age at interview: 26
Sex: Female
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Yeah, we’re really close. We tend to go out together on a Saturday. So after this interview we’re going out to [city name] for the day, and we, I think we have quite a normal brother-sister relationship, even though James does have quite profound autism and does have a language disorder as well. You know, we do things like go shopping together, we choose his clothes sometimes. We go out for a takeaway; we go to a restaurant and that kind of thing. We can’t do the things that he doesn’t like to do because of his autism, but yeah, we have a fairly normal, I would say, brother-sister relationship. 

“I always lend my mum a hand babysitting, or getting him out and about”
Most people took on considerable responsibility for their siblings when they were growing up. Most talked about looking after them, or protecting them at school. Some helped their parents by stepping in and supporting their sibling, or by not making a fuss if something wasn’t going right for them. Many described a unique relationship with their sibling and were able to interact with them in a way that many other people couldn’t. For example, some had developed their own form of sign language, or had found particular ways of diffusing tensions, such as playing pool or watching films together. A few talked about “pushing the boundaries” with their sibling and encouraging them to do new things. This included going out to different places, encouraging them to extend the range of music they listened too, or the television programmes they watched. 

 

Steph has made sure that her relationship with her brother has changed as he’s grown older. She...

Steph has made sure that her relationship with her brother has changed as he’s grown older. She...

Age at interview: 26
Sex: Female
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Has your relationship always been the same with him? Or how has it changed throughout the past twelve years?
 
Oh I think it’s changed in kind of terms of he was my little brother and we did things like we’d go to the swings and we’d go to the park. And like any kind of brother-sister relationship as he’s grown older, we’ve done different things, and you know, as his needs, his wants and interests have changed, so what we’ve done together has changed. So we now programme his iPod and listen to music in the car, and watch DVDs and go up the take up away, whereas we wouldn’t have done that five years ago. We’d have gone to McDonalds, and you know, maybe gone to buy him a new toy. So it’s changed, like all relationships change. And I’d say as he’s got older, I’ve worked hard to kind of reconcile, to make sure that I’ve moved on as he’s moved on as well, so I don’t view him as my little, tiny brother all the time, because he’s six foot three now and that would be strange. And he’s dwarfing me. So I think that’s something that I’ve really tried and had to work hard not to baby him, not to kind of make his autism an excuse for our relationship to kind of stay at an early level, but we’ve worked hard to make sure that we do things that normal fifteen year old boys would do and that… you know, that we can do together. So I think that’s something that’s changed in a very normal way.
 

“It was almost as though I didn’t feel connected to him as a brother”
While some people said they were very close to their siblings, a few had very different experiences. They felt very distant from them and, as one person said, fought or avoided them. This was sometimes because the sibling was in a residential school or home and so their lives were not closely intertwined. One young woman said that she had become less accepting of her brother’s strangeness as she grew older and she was glad she would be able to leave home at some point. A few other people said they left home quite young “which says quite a lot”.

 

Lucy sometimes gets on with her brother but they generally just avoid each other.

Lucy sometimes gets on with her brother but they generally just avoid each other.

Age at interview: 18
Sex: Female
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Sometimes I get on, sometimes, most of the time it’s not. It’s kind of difficult with my brother, we wouldn’t see eye-to-eye a lot, so there’s a lot of arguments there. Though sometimes we do get along, we make things work or just generally avoid each other [laughs].

“I haven’t been able to grow up and share certain things with him”
The biggest difference from many sibling relationships was that the relationship was one way; people were not able to share their feelings, confidences, worries or concerns with their sibling. This was because their siblings were only interested in specific things relating to their own interests, had not grasped the skills of social interaction, or were not able to communicate effectively with them. Several said that their siblings could be affectionate and loving, but not able or willing to interact with them in a way they would have liked. As one woman said, “I don’t get a, ‘Hi! How are you?’ He never, never asks about me at all, which hurts. Like, even though I know how it is, it still rankles”. Those people with only one sibling felt this more keenly. For example, one young woman said she was never really sure what to say if anyone asked her if she had brothers and sisters.

 

Graham feels like an only child in some respects and misses out on not being able to talk to his...

Graham feels like an only child in some respects and misses out on not being able to talk to his...

Age at interview: 24
Sex: Male
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Well that’s the one thing that I think I miss not having a normal brother where I can’t talk to him about any problems I have. Which I know like which is nice that, like my ex-girlfriend like is really good friends with her sister. They would go out together and they would like always talk to each other first if there was any issues and stuff. And that’s the one thing I do really think that I missed out on. In that sense though, I feel like an only child in certain aspects, when it’s like, when people talk about having brothers and sisters and I will say, “Well I’ve got an autistic brother.” And it’s kind of like a half way relationship where there’s like half of having a brother I’ve missed out on, but there’s still the other half that’s fine. But as I said before there’s lots that’s made up for it and I wouldn’t change it. But that would be the one difficult thing.

 

Eloise’s brother has learnt to sometimes ask if she’s had a good day, but he couldn’t deal with...

Eloise’s brother has learnt to sometimes ask if she’s had a good day, but he couldn’t deal with...

Age at interview: 18
Sex: Female
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For some things. He’ll... it depends, it does depend quite a lot on whether or not he’s, say I’ve come in, I’ve come in from school and he’s been at home longer, and if he’s had a good day he’s more likely to come up to me and say, “How was your day?” Because he’s knows that’s a kind of what you do, but if he’s had a bad day, he doesn’t remember kind of, he’s got quite, I don’t know he’s not always like this, because he does talk about quite random things, like he’ll suddenly ask you about factual things, completely out of the blue. It’s not been on the telly, it’s not been on the radio. You don’t know where it’s come from, but he does have quite a lot of structures that he sticks to, like you come in from college and he’ll ask you how your day was, if he’s, if he’s had a good day, if he’s not, if he remembers and he has the structure of ‘how are you?’. ‘I’m good. How are you?’ He has, he, I mean obviously everyone has, has structures like that, but he seems to stick to it, and if I was to say to him, “No I’ve had a really bad day” and get upset, he wouldn’t, I don’t think he would know how to deal with that, because that’s not the pattern for that conversation.

 

Anne said she had to play both roles when playing adventures with her brother.

Anne said she had to play both roles when playing adventures with her brother.

Age at interview: 54
Sex: Female
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He didn’t have much, so much, sort of much temper. So he was quite affable, quite easy going. He was good for playing board games with, and we’d go off on little adventures around the countryside. He was quite biddable and, but you didn’t, you had to sort of play both roles almost. You had to... You didn’t get much back really, which is, you know. So it was quite an exercise in me almost having to make something work really and find a game that he could play. We had sort of toy cars and bricks and things. I wasn’t a girly girl anyway, so … When we were very little I think we just, we had sort of pedal cars and a swing and things like that.
 

Lucy says she misses out on having an older brother and feels that she is the older sibling.

Lucy says she misses out on having an older brother and feels that she is the older sibling.

Age at interview: 18
Sex: Female
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It’s been like different from other people. Because when I hear like other people with their older brothers, or, always a lot more caring, maybe protective over each other. Maybe their older brothers, like, like they bring them out like in their group of friends to have like, with my brother I don’t get that. I feel like maybe I may have lost out on that kind of having an older brother sort of attitude or stereotype. Because I guess kind of it’s like he’s, he maybe the older, the oldest child, and older than me, and should be maybe like looking after me and whatever, like sometimes I do with my sister. But otherwise I kind us we’re both the oldest sort of thing. Even though I am the second child I just feel like, yeah, it’s just, and that’s what I kind of miss out on. And like it’s almost as if I’m the eldest and sometimes I feel yes.

“I used to think “Why can’t he be like one of my mates?”
The difficulties some people experienced growing up often revolved around particular behaviours by their siblings. Some people reflected on embarrassing situations they had experienced in public places with their siblings. For example, one brother had a pathological hatred of Dora the Explorer which could cause some awkward encounters with children when he was out. A few were destructive and could break people’s possessions which they found upsetting or annoying. A few of the siblings could be aggressive or violent when they were distressed. One person recalled how, when she hugged her brother recently, he “bit her neck like a vampire”. She likened living with him to “living with a time bomb without a timer”. A few siblings were territorial over space and wouldn't let anyone else in the living room (see ‘Organising family life’). 

A few felt they hated their sibling sometimes when they were growing up. They felt frustrated or distant from their sibling, though these feelings could cause them to feel guilty.

 

Ellie can remember hating her brother at times, “not because he’s autistic, but because he wasn’t...

Ellie can remember hating her brother at times, “not because he’s autistic, but because he wasn’t...

Age at interview: 17
Sex: Female
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I guess there’s always been times where I’ve, it sounds horrible but I have hated him. Not because he’s autistic, but because he wasn’t normal. I have rarely ever thought that, but it was when there was a lot of people in our house. I just regretted that he was like it. Then I’ve got more used to it, and just more accepting that he’s not going to change very much, but the more he learns, the more he’s going to be able to do different things, and the more he enjoys, like he never used to be able to go to the cinema, because he used to get scared of the dark. Now he absolutely loves it, and it’s really nice just to take him to that. But there’s times when he has got really angry, and he has lashed out bitten me before, and I had to go hospital because he broke my skin and there’s like, there’s lots of different things that have made me, just want him to be a bit different, but I’ve never stopped ever like loving him as like my brother.

In terms of now, many people were in very different situations with their siblings. Some people were at college or working abroad, and so didn’t see them as often. This suited some people but not others. Others were still living at home with their sibling, and a few older people saw their siblings less frequently, as they were settled in independent supported living. 

 

Anne talks to her brother regularly on the telephone and he sometimes sends her flowers on Mother...

Anne talks to her brother regularly on the telephone and he sometimes sends her flowers on Mother...

Age at interview: 54
Sex: Female
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Perhaps every two or three days I’ll phone him up and we’ll go over the same things every time. He’s always anxious. I’ve learnt that is a part of the condition, so I don’t get a, “Hi! How are you?” He never, never asks about me at all, which hurts. Like, even though I know how it is, it still rankles.
 
It still hurts?
 
Yeah. Yeah. As he is my only sibling as well it does hurt. But, I guess I sort of picked up the mantle that my mother left. And she was just not a goddess, but I mean, she’d have just... if you want something to live up to, it’s a hell of a role, a hell of a thing to live up to. 
 
I’ve got incredible patience with him. I can sit and listen. I can talk, explain things. I think he’s very fond of me. He tells the workers or you know, ‘my sister said this’, or ‘I must check with her’. And he sends me ... on Mother’s Day I might get some flowers, I wish he wouldn’t because they’re so expensive, which is really nice and he’s really pleased, I can tell he’s really pleased when I’m there. You can just hear it, he just calms down. It’s sort of like well this is, I know this person, this is…. And of course I know all his interests. I can like anybody you know them so well you know what to say and keep things going. But then just as quickly he’ll go into his close down and he’ll be working on something and then if I sort of mention something I get quite an unpleasant look back because I’m breaking into that zone. 
 
 

Graham doesn’t like the fact that chunks of his brother’s life are not known to him, now he works...

Graham doesn’t like the fact that chunks of his brother’s life are not known to him, now he works...

Age at interview: 24
Sex: Male
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But again I haven’t really witnessed him having any bad instances for the last few years because he’s been away and I’ve been away for the last year so, I only see the nicer bits at the moment. But I know my mum calls up and says he has trouble sometimes at school and things, so he’s a bit different to what I’m used to. I’ve never really seen him like swear or anything, but apparently sometimes he can swear like a sailor at school [small laugh]. And I’ve never really witnessed that though. So that’s kind of weird actually, it’s almost like I don’t know everything about him now that he lives away and I’m away as well.
 
So what does that feel like? If you say you used to knowing him inside out?
 
Yes, yes, it’s not amazingly nice, I wouldn’t say. I much preferred it when I knew everything about him and I knew how he was getting on, and it’s more distant now, but I mean I guess that’s just growing up, I mean it happens with normal brothers as well you learn less and less because people go off and have their own lives. But he’s always here, and my mum’s always going to be, Mum and Dad are always going to be in contact with him so it’s not that I’m going to lose contact, but it is, it’s weird that I don’t know everything about anymore. Especially since I’ve moved away. Because I hardly ever see him. I mean I contact him on Facebook when I can and when I call home and speak to him and things, but he’s not one for conversation on the phone. He’ll just ask what computer game you’re playing at the moment and stuff, so. It’s nice like when I came home last night and he had a new show he wanted to show me and so we sat down for a couple of hours and just watched TV together. And although you don’t really talk, it’s just nice spending time together and he, he’s like pig in mud, he’s really happy with it and stuff. And you can tell he gets a lot more relaxed and stuff.
 
Keeping in contact with him is quite difficult isn’t it?
 
Very difficult without seeing him in person because his communication skills as I say aren’t amazing. He’s a lot more, yes, a lot of the time we spend together we like playing computer games and watching films and stuff, which is really nice the time we spend together. But we don’t normally sit and have an in depth conversation about stuff…
 


Last reviewed August 2018.

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