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Having a sibling on the autism spectrum

Friendships

Friendships are valuable relationships as they provide companionship, recreation, help and guidance, and can help to counteract the stresses of life. Some people we spoke with said that having a sibling with ASD had complicated their friendships. Others explained that they had very supportive friends; in one case the friends were imaginary for several years.

 

Jenni had a “ridiculous number” of imaginary friends growing up, none of whom were human.

Jenni had a “ridiculous number” of imaginary friends growing up, none of whom were human.

Age at interview: 18
Sex: Female
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Actually I still kind of, I’m quite a sort of book-wormish type person, and I very much got lost in my own fantasy world. And I had so many imaginary friends, actually, ridiculous. I think I probably have the amount of imaginary friends on my own, than probably the rest of the population of my town does. So [laughs] and they were not exactly normal imaginary friends either. They were never human, ever. One of them, well some of them were dinosaurs, most of them are dinosaurs. I like dinosaurs [laughs]. Diplodocuses. Pink Diplodocuses. I don’t know what goes on in my brain [laughs].
 
And why do you think you had so many imaginary friends?
 
Because I didn’t have any real ones. But … and I always found that like, the world, I could create in my brain, was so much more interesting, than the one that I’m actually in. I’m under no disillusion that I did get lost in this world, because I didn’t like the one that I was in. Like the interesting, some of the worlds I created in my head, they were hugely like, just random things. Like I’d have like, before I got the inter… like because I didn’t get the internet until I was about year ten. I wasn’t aware of like fan fictions, fan art and all of this sort of stuff, but I still sort of did it in my own way. To a scary degree to what people actually do. It’s a little odd, but I’d sort of get lost in like Lord of the Rings worlds, or in Harry Potter or Spiro the Dragon. And I’d just create my own little world and my own little characters to go into these worlds. It’s kind of sad that I didn’t even stop playing at ten to twelve. I was like thirteen, just because it was fun, and it was something to do. I sort of slowly changed. Like obviously there was like the more heavy pretend stuff you do when you’re younger and then I kind of got lost into the Sims. I was very, very into the Sims at one… I mean I was like addicted to it. And then it grew into video games, the more fantasy style ones, like RPG type games. So like, Final Fantasy and Kingdom Hearts and things like that. And it was when I got into Kingdom Hearts that I sort of become more who I was, who I am now. Just because I could lose myself into this world, and through this world and these characters I created I sort of built myself up and then I made friends through that and it sort of developed from that.
 
You mean real friends?
 
Real friends. Yes. I didn’t. I don’t believe... Like I never thought my imaginary friends were real, but I always knew they weren’t real, but I liked to pretend they were.
 

Several people told their friends that their sibling was on the autism spectrum. For the most part it seemed that they simply wanted to share information about their lives with their friends. However, one felt he should explain it because he feared his friends would be “put off by it”. Another told them in order to protect her brother, who was sensitive to the reactions of others. Some chose to explain it in more detail than others. A couple said that they would “mention it”, but that it was not something that “comes up in conversation”, whilst some others explained to their friends exactly what their sibling was like. 

 

Marti explained her brother’s autism to friends who were coming to visit her at home.

Marti explained her brother’s autism to friends who were coming to visit her at home.

Age at interview: 20
Sex: Female
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And did you talk to your friends about him much when you were younger?
 
Not really. I didn’t think it was ever that big an issue. If I had friends over from school I would explain that yeah, that’s my brother, he will just do his own thing. He won’t talk back because he’s autistic. But I never had, I was never bullied or anything for it. It was, not really a big deal. I guess I was quite fortunate that people around me were so understanding.
 
Okay and why did you feel you had to tell them about it whenever they would come over?
 
Just if I was being picked up from somewhere and my brother was there with his thumb in his mouth and or if he would kick off in a supermarket, or if he would start screaming or getting upset for no reason, I would just let them know that he doesn’t understand things.
 
 

Ellie found that others were accepting of her brother's autism if she was.

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Ellie found that others were accepting of her brother's autism if she was.

Age at interview: 17
Sex: Female
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Like before I guess I wasn’t because it felt like I was holding so many secrets just, it’s like a different life. But now it’s more mingling together, and I don’t mind telling people, because everyone’s a bit older, and they all understand a bit more, and it’s not so hard. It’s better.
 
Okay and did you go to college with the same people that you were at school with?
 
Mostly. But I found that I made a lot of different friends and it was just easier at first not to mention anything, because they didn’t mention anything. But as you became better friends and you sort of learnt things, just be like, just quickly mention that he’s in a care home, and then just quickly by pass it all. But they’re all a bit more grown up. So more people just accept it really. If you’re more accepting about it, then people will be as well. But when you’re trying to keep it a secret, people pick up on that.
 

In general, people said that their friends were supportive and understanding. As one person said, “no one really thought anything different of it”. However, some said that their friends didn't understand the severity of their siblings’ autistic spectrum disorders (ASD). For one person, this was particularly difficult to manage because her brother didn't want her to discuss it with anybody. Another person found it tough when her friends asked her questions about her brother. She felt that they wanted to know how her life was different but, for her, life with a sibling on the spectrum was normal and she didn't want people to “feel sorry” for her.

 

Amy’s friends are good with her brother. His diagnosis did not “bother any of them”.

Amy’s friends are good with her brother. His diagnosis did not “bother any of them”.

Age at interview: 17
Sex: Female
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Do you ever have to explain Harry’s autism to your friends?
 
Yes, I did explain it. I mean when he was first diagnosed I said to all of them, oh, because they’ve all met him before. I said, “Oh, Harry’s been sort of been diagnosed…” But all my friends think he’s great, they think he’s really sweet. But yeah, none of them, it doesn’t bother any of them or anything. I still have them over and stuff. My best friend [friend’s name] really good with him, she loves him, and he loves her as well. He really likes [friend’s name].
 
 

Katherine’s friends think she is “wrong” and “cruel” in her descriptions of her brother, but they...

Katherine’s friends think she is “wrong” and “cruel” in her descriptions of her brother, but they...

Age at interview: 21
Sex: Female
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Oh they’re really confused because when I describe him they, they think I’m wrong, I’m being cruel speaking of him how I describe him. And I have to explain that whenever they see him or they’re invited into the house, they see him when he’s happy and friendly. They don’t see the stranger sides because it would be cruel to have them around. So they don’t really understand properly where I’m coming from. Occasionally, as I said, I’ve got a very close friend who knows everything. Occasionally he gets a snippet of my brother’s strangeness. Years and years ago it was cold one night and we went to sit one play swings in the village, and I went into my brother’s wardrobe and got my friend a jumper. He wore the jumper and came back, and my brother was furious and shouted at me that having done that very loud. I laughed and said if I had asked he would have no or something like that. And just occasionally they will get a peek at what I’m talking about that makes them realise that this is not quite normal.

What, when and how much people told their friends also varied depending on their age and the context. For instance, some didn’t talk to their friends about their siblings when they were younger, but it became easier to talk about when they grew older. One explained that she now finds her peers are more understanding. Some also said that it was difficult to tell new friends and that it was important to get to know people well before they told them. One person had only told her best friend. 

 

Flick talks to her college friends about her autistic relatives, but not to anyone she has just met.

Flick talks to her college friends about her autistic relatives, but not to anyone she has just met.

Age at interview: 21
Sex: Female
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My close friends I sometimes talk to it about, but I don’t, like if it, I don’t think I’ve ever turned round gone, “Oh yeah, by the way, I have three relatives that are autistic.” If it just like comes up in a casual way. Like, it’s only with my close friends. I won’t, I don’t talk about it with people I just meet or anything. But I mean they’re just sort of like, they’re on the same standing as me they don’t think it, like they don’t look at me and go, “Oh your family has issues,” or anything. They, I mean like they’ll meet my mum and they’ll meet my brothers and they’ll go, ‘actually yeah they’re pretty cool’. So it’s nice, I mean, because I’d hate to be associated with people that had a lot of prejudice and think it was a bad thing to be on the spectrum in any way, shape or form.

 

Eloise doesn’t feel she has to tell her friends about her brother because it is not obvious that...

Eloise doesn’t feel she has to tell her friends about her brother because it is not obvious that...

Age at interview: 18
Sex: Female
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So when you’ve got new friends in the sixth form at your new school and you bring them home, do you explain that there’s anything wrong with [brother’s name]?
 
No.
 
You don’t do anything to prepare people?
 
No. I mean, now chances are he’ll be sitting reading or on the computer or doing something. He won’t really, he might say hello, but he won’t, he won’t really... I mean my best friend knows that he has, he’s on the autistic spectrum, but that’s just through conversation and also through knowing him for quite a few years now, rather than just coming round a few times or something. But in terms of someone new coming round I don’t really, I don’t say anything. It’s not obvious. And It’s not there’s nothing that they couldn’t do around him, that they would do to someone they hadn’t met before or… I just… it wouldn’t, yeah [laughs].
 

Some people said that their friends had established good relationships with their siblings. A couple said that they treated their brothers “as one of the lads” or thought they were “funny and adorable”. One actively tried to include her brother in her circle of friends. Another would have liked to, but her brother refused to communicate with them because he felt they talked about things that were “not worth talking about”.

 

Graham’s friends have a good relationship with his brother. They share computer games and chat on...

Graham’s friends have a good relationship with his brother. They share computer games and chat on...

Age at interview: 24
Sex: Male
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 Yeah, my friends have actually been incredibly supportive around it. I mean when I was younger I didn’t go blabbing it about and stuff. I didn’t like... there was certain people, they wouldn’t make comments deliberately about him, but I didn’t like it when people made jokes about autistic people as such when I was younger. That used to make me quite angry, and had quite a few scuffles as a result of it and things, but no one would be directly like horrible about it, and I was never really embarrassed to talk about it. It’s not like one of those situations where you don’t want anyone to know. And yes, no one really thought anything different of it. My friends they’ve been amazing, the ones who live round here. And they love him. He gets on so well with them, and he still even Facebooks with some of them and exchange computer games with them and stuff, so my friends have, yeah they’ve been great with him and stuff. And I’m still very open about talking about it. It’s nothing I’d shy away from talking about at all. Something I’m quite proud of having a brother and I’m quite happy that I’ve looked after him and things. Very open about it I’d say.

 

Sophie involves her brother in her social activities with friends.

Sophie involves her brother in her social activities with friends.

Age at interview: 20
Sex: Female
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If I’m going out with my friends, for like a night out or something, not on the town, or anything, but just to the cinema, and he feels comfortable with them, I’ll invite him along. Because, a close group of friends know about [brother’s name]. I explained, you know, what he’s like, and if he was to run away, you know, just to be calm round him, don’t judge him, don’t look at him, or treat him differently to anybody else. So he comes out with me on little trips out. But yeah, he likes doing that. He only does it occasionally, but if he’s in the mood it’s fine. So we go out.
 
That’s good. And you said there that you’ve told a close group of friends about him?
 
Yeah.
 
Why do you think you told them about him?
 
Just because [brother’s name] feels that he’s not accepted if someone knew that there was something wrong with him, they wouldn’t accept him, and I felt it was my, as a sister, to kind of just prompt them to say, you know, just don’t… because I think they feel quite bad as well, because they know there’s a problem, but they don’t feel they know how to react with it. Like how to treat him. And I just said, “Well treat him like a normal person”. Because he is a normal person. Just doesn’t function the way we do [small laugh].
 
And how do they treat him now?
 
They just treat him like one of the lads really. Like, they’ve all got mutual interests. Like my friend [friend’s name], he does karate, martial arts, and [brother’s name] absolutely adores that, although he hasn’t got the confidence to go to a group. Karate Kid films and stuff, they’ve got that in common and The Inbetweeners. They love that. So they’ll joke about that. And it’s nice. Yeah, I’m quite lucky to have a group of friends that understand [brother’s name]. 
 
Yeah, and have your friends always understood?
 
I wouldn’t say they’ve always, there’s been the few that have. But people that I’ve known that, you know, that have been to the house a few times, they wouldn’t speak to him, because they wouldn’t know how to treat him or whatever. And I found that quite sad. So, you know, every group of, well anyone that comes to the house that’s my friend, I’ll just prompt them before we go in, and just say, “You know [brother’s name], he is a normal person. He might seem a bit rude, but he’s not rude. That’s just him. And he doesn’t know how to socialise.” 
 

A few people said that their friends were not sure “how to treat” their siblings or held negative views about them. These included being scared of them or making critical remarks about them, which, for one, resulted in “quite a few scuffles”. A couple of people felt that their social skills had been affected by growing up with their siblings. For example, one sibling often destroyed his sister’s possessions. As a result of this she didn't like sharing her things with her friends when she was a child. 

 

Jenni was bullied at school. She felt this was linked to her poor social skills that resulted...

Jenni was bullied at school. She felt this was linked to her poor social skills that resulted...

Age at interview: 18
Sex: Female
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Well as I said when I was younger, I obviously couldn’t have friends around and because I didn’t really have, because obviously I didn’t have my brother to grow up with, my social skills are terrible really [laughs]. You know, really bad when I was younger. And I was bullied a lot like all the way through school. And it still hasn’t really stopped but I just don’t care anymore. And it’s just sort of a knock on effect, that caused that and then this caused… and it just escalated. So yes, for all of my primary school I was bullied because I was, just like I was like that weird kid that no one really, like no one got to hang around with, so no one really got to know. Because I’m, also because like what was going on at home, I was always like slightly more emotional. So I mean, and I was, you know, how you get these kids that just cry over everything. I was one of those anyway so … And at about year two I started getting bullied, like it was just sort of like typical picking on just a random kid and then it just slowly progressed until it peaked in about... Actually no, it didn’t peak, it sort of went up, down a bit, and then up again. But in like year four it got really bad and it didn’t help that I got my hair cut like into, you know, a stupid bowl cut thing and I looked like mushroom [laughed]. Obviously that made, because my hair it was went [explosive sound] and I just got picked on for that, and like everything got like so much worse. And then it sort of went down again and then it picked up again. Then my hair started to frizz as well. It wasn’t just big it was frizzy as well, and I got called Hagrid. I still cannot tolerate that, I mean I still snap at people calling me that, because it had that much of an impact. And some of the stuff that happened to me in my primary school was horrible. Like they put daddy long legs in my lunch box. I don’t even understand that. I don’t even know how they caught them to be honest but, and the school didn’t really care.

 

Damian did not know who to “have a go at” when he overheard his friends saying negative things...

Damian did not know who to “have a go at” when he overheard his friends saying negative things...

Age at interview: 29
Sex: Male
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When I was younger, I used to really get annoyed. I found myself asking why, why has he got this? Why can’t he be normal? All my friends would know he was different. And I’d overhear my friends talking about him, taking the mickey, and that, that was hard to hear. But I looked at other brothers and relationships they had and I often thought why can’t I have that relationship with my brother? Why can’t we be normal and go out and play football, and not worry about whether he’s going to have an outburst? Yeah. Yeah, yeah, it was hard at times, especially growing up, yeah, definitely.
 
And when you overheard your friends taking the mickey out of him, how did you react to that?
 
This sounds really harsh, but I didn’t know whether to have a go at them, or have a go at my brother for being different, you know, that was...
 

Several people said that their friendships were complicated by aspects of their sibling’s behaviour. For example, having friends round could be difficult because of limited space in their home or because their sibling couldn’t cope with people in the house and it would be unfair to “spring all of those people on him”. One person recalled her brother attacking a friend she had brought home. 

Not only was having friends round sometimes difficult, but, for some, going out with their friends was not easy because their siblings became upset if they saw them leaving the house. These constraints affected the potential friendships a few people felt they could have had when they were growing up.

For some, friends provided an insight into how life without a sibling on the autism spectrum could be. They found themselves comparing their sibling relationships with those of their friends.

 

Lucy feels she has “missed out” on having close relationships with her siblings.

Lucy feels she has “missed out” on having close relationships with her siblings.

Age at interview: 18
Sex: Female
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Sometimes I feel I do miss out on maybe like childhood sibling friendships and that. Because some siblings are like really close and you know, there’s ties there like, you know, they’ll always be together, be close and all that lot. They’ll be practically like, I would say like a friend, because sometimes as friends you may say, “oh we’re like sisters”, but in other ways I’d be like “oh we’re really close friends”, like that and the other way round, because I feel like, you know, my relationships with my friends are closer than what, is what, which I have with my siblings. Yeah, there’s just the closeness I could be with my like brother and sister, whereas I see like my friends they’re really close, whereas I’m less, so …
Last reviewed August 2018.

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