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Having a sibling on the autism spectrum

Highs and lows

Having a sibling with autistic spectrum disorder (ASD) had both high and low points for the people we spoke with, which changed over time as they grew older. 

Whilst a lot of the stories and experiences people talked about centred on the difficulties and challenges of having a sibling with ASD, they also talked about the rewards and benefits. People described their experiences as “character building” and some felt they had become better people as a result. Others described how they had become “independent” or “cautious”. A few people said that, although they had experienced difficulties, they wouldn’t change their siblings or anything about their lives so far. 

 

Flick used to think a lot of her friends’ mums were boring.

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Age at interview: 21
Sex: Female
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So do you want to tell me what it’s been like growing up with brothers and a mum who’s on the spectrum?
 
I don’t know. I just thought my mum was a bit mad [laughs] cos she was diagnosed like really late. So I just thought she was a bit mad, but I suppose when you see her every second weekend it’s probably kind of cool to have a mum that’s a bit mad, because she does fun things. And it’s nice to do fun things. 
 
So you thought she was mad and then you found out she has Asperger's?
 
I mean not like mad in a bad way, but like…
 
Good mad?
 
Like mad hatter mad.
 
What sort of things would you do that was fun?
 
We used to go swimming a lot. We went to the cinema. She let us go see Space Jam on one of our last weekends before we moved out to Australia and that was cool, and she’d take us to the park and stuff, and we used to do like crafty type things. I think we went to a fete or something and we did all this crafty type stuff, which is fun, because it’s not like we’d just go over to her house and just watch TV. She’d make us do stuff.
 
So did you used to look at your friends mums and sort of think my mum’s really different to that?
 
Probably but I used to think a lot of my friends’ mums were really boring. 
 

An enhanced understanding of 'difference' and 'disability' generally was one of the main things people talked about. They said that growing up with their sibling had made them more tolerant and understanding of people in general and also of disabled people. They said that they would neither stare nor make jokes about people who appeared to have physical or learning disabilities. They also said that they had become knowledgeable about ASD. One person was able to “educate my friends about it”. Another said her experiences would enable her to cope with having children on the spectrum. It was something she would “take in my stride and adapt to”.

 

Ellie talks about how by growing up with her brother she has become able to see the positive side...

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Age at interview: 17
Sex: Female
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And how do you think that having a brother like him has affected your whole family?
 
It sort of makes it really difficult to stay together, and I think it sort of breaks it apart a bit, but when it first happened people get angry with the other one, and start blaming each other. Then everyone gets a bit stronger about it, and like they realise that he’s still your son or your brother or your grandson and he’s just a bit different and then everyone accepts it more and then everyone can treat him properly and nicely and everyone’s a bit more open to other things as well, like if you see any sort of disabled person, you just, see a different person. If someone, who doesn’t really know much about disabilities, is walking down the street and they see someone in a wheelchair. They might just look a bit, but I would say no one in my family would ever give a second look to them because it’s more accepted within us. We’re more open with people and we don’t ever say anything different about other people. We know what it’s like to be said about, and we’re just a bit more understanding about things. So it’s changed us in the way that we are towards people and the way that we would treat others. It’s helped us to love people, whoever they are. And just enjoy the benefits of them, rather than think about the negatives all the time.
 
 

Jenni explains that her experience with her brother has made her more understanding of both...

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Age at interview: 18
Sex: Female
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If my brother wasn’t autistic, I probably wouldn’t have been picked on as much to be honest because I would have had more time to interact with people and I probably wouldn’t have been such a bossy little cow and things like that. But… I wouldn’t really changed anything that happened, because if I changed it, then I wouldn’t be who I am now, and all things aside I’m quite happy with who I am now. So I mean once you get through all the shit, quite frankly that is growing up, once you actually get to grown up, I think you have…I mean I find that I have a much better understanding of like just people in general. I’m much more sympathetic and well I’m much more sympathetic to people who actually have problems and much less intolerant of people who are just like, I hate my life. Why? I’ve dyed my hair the wrong shade of black, type people. It’s just, they just get on my nerves. But … 

 

Alison talks about how her knowledge about autism was helpful when her daughter was diagnosed.

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Age at interview: 50
Sex: Female
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I mean actually, I mean the biggest, biggest impact it has had, is because with my children because actually one of mine is actually on the autistic spectrum, one of my children. And having had that experience, well, a) I realised what I was dealing with quite quickly, compared to a lot of parents. I could recognise the signs, and I pushed a lot harder to get the right help for mine and she has actually done really well. And of course you can’t compare one with another. You don’t know that my brother would have done better. But knowing what I know now, what’s available in special autistic provision schools, I do think that having had more appropriate help, he probably would have done better, but how much better you can never know. So that’s yeah, so actually in my personal life as a adult, that’s had a huge success impact. It was very odd because I mean we were told, or my parents were told when my brother was diagnosed, “Oh, yes, it’s genetic, but nobody else in the family need worry.” So yeah, I was surprised to have it coming up again in my own children, but at least I knew. I had some idea what I was dealing with.

Some people said that they had learned about and done things that they otherwise wouldn’t have done. For example, one person attended a young carers group and another said that because she had to look out for her brother, she avoided drinking, smoking or doing drugs. Some people also said that growing up with their sibling had influenced their choice of career; one person was a speech and language therapist, another was a learning support assistant for children with Asperger syndrome. A few thought that their schooling had improved because of factors related to their siblings. One said she attended a better school when she and her family moved to a new town to be nearer to her brother’s school. Another said that her schoolwork “benefited” because she wasn’t “distracted by other things”. However, her brother’s dependence on routine meant that doing extra-curricular activities was difficult.

 

Flick talks about a college film project that she made about autism.

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Age at interview: 21
Sex: Female
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Not straight away. But when Martin got diagnosed I did some reading and stuff and I did a documentary on it for one of my college projects which actually did quite well and I interviewed my mum and like, and… no we didn’t interview Martin, but yes. I did some reading on it, so I know more about what it is now. But not like masses like mum does.
 
So what was the documentary about, your family was it?
 
It was just about autism in general, but well I was, there was me and another guy in the group who both had relatives that had autism. So we found we found it easier to interview and film our relatives because we basically had the research at home. Not meaning to make my family sounds like lab rats or anything, but it was easier and we probably had one of the most interesting projects out of my whole class.
 
 

Steph talks about choosing her career in speech and language therapy.

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Age at interview: 26
Sex: Female
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Do you think that his diagnosis had anything to do with your choice of career?
 
I think because of James’s diagnosis I’m probably a better person in lots of ways. I have learnt to value every young person with a disability as someone that’s absolutely loved and valued by their family. So I would say it must have because we’d never known what a speech therapist was, until James had one. And there weren’t many speech therapists about when I was little or when James was little, so my mum grew her own. We kind of looked at what I could do, and what I liked and kind of thought, yeah, that seems like a nice thing to do. Because we’d obviously, we knew ours and we knew what kind of things she did and I enjoy working with young people with autism, because I think I know what’s going on and it doesn’t surprise me when they do things that it would maybe surprise other people, and I’ve actually worked with young people with autism since I was sixteen, so before I’d chosen my university degree qualification. So, yeah, I think it absolutely has.
 
 

Katherine says that there is a need in her to help people.

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Age at interview: 21
Sex: Female
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Yes. Yes, I think, it’s funny there are a lot of positive things. Perhaps the biggest is that I’ve learnt to be by myself and to help people. You said other people in your study are thinking of career choices that could help others and I think that’s in me as well. A sort of need or understanding of how to help people. Like of my group of friends, tend to be the person people sit down with. 

 

Lucy says that her choice of degree may have been influenced by having a brother on the spectrum.

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Age at interview: 18
Sex: Female
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I’m not quite sure if it did or not. It’s going to, well I kind of chose psychology, like, just it was something maybe slightly touched on at secondary school and it’s like, “Oh that’s interesting”. I was really interested what it was about. And I went and I started it. And at first, when just going in first like of couple of weeks like A levels and stuff, I was like didn’t really know what I wanted to do and stuff and I was, I was good at it. I did get a good grade and I was interested in it. But at the same time I was like, “Oh I don’t think I’ll do psychology. I don’t think I’ll do that.” And I didn’t really know what I wanted to do, but then I guess by the end of like the first year, where it’s like we’ve got to start making decisions now. Have to decide what you want to do. Other subjects I was taking I was like, “Okay, I just, this one seems the logical option. I just, I’m good at it, and I enjoy it, then I should probably go towards that direction and then during like revising I kind of read a bit and I was really interested in that, and all right that is what I want to do. I’ll go and get into it. But obviously I’m not sure whether because with my brother whether that did have any influence, whether it was subliminal or something. Do you know, it wasn’t in my head to begin with so …

Some people felt rewarded by their relationships with their siblings (see ‘Relationship with siblings’). Some of them also said that their experience with their siblings had helped them to learn to put things into perspective. One said that as a result she is less sympathetic to people who worry about trivial things like dying their “hair the wrong shade of black”.

 

Sophie says she has learned a lot from her brother who reminds her that things could be worse...

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Age at interview: 20
Sex: Female
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He’s funny. [brother’s name]’s got a wicked personality. He’s really, he’s so funny. You know, if I’m feeling down about something, he puts things into perspective. Like he knows, you know, about world issues and things, and if I say, “Oh I’ve broken by nail or something.” He goes, “Sophie at least you’ve got…. You can look after your nails. You can grow them again. You haven’t got a disability where you can’t, you know, reproduce things that can be fixed.” Or if I say, “Oh my leg hurts.” He goes, “Sophie, at least you’ve got two legs to walk on.” And that kind of thing. So … yeah, he’s really good like that. And he’s so patient as well. Like with all these letdowns and stuff, he’s just taken it on the chin and been really polite with it as well. Because I wouldn’t have stood for what he’s stood for to be honest. So he’s taught me a lot as well, about life [laughs]. Yes.

 

Eloise says that it was “amazing” when her brother was happy after school one day.

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Age at interview: 18
Sex: Female
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...But he does, yes, he comes up, I mean he, he comes up and hugs me and stuff like that, which isn’t something he does with that many people. And even generally in people with autism isn’t necessarily that common. So I feel quite… when he does things like that you feel quite, like honoured almost. But, so there are kind of, definitely, there aren’t necessarily... I don’t know that there are positives to autism except for I think possibly intellectual ability in his case, but it does mean that you probably appreciate things that, when he does, if he has a good day, like he came out of school a while ago and said that he was happy, and that was like ultimate, amazing my it was just such a shock after a year of really, really bad schooling, not schooling, but like getting him to go to school being really bad. And just a complete battle all the time. For him to come out and say that he was, he was happy was just amazing. He went back the next day and had a terrible day at school, but it was still a day that he said that he was really happy and that was, that was really amazing kind of, so…
 
Made you feel happy?
 
Yes. Yes.
 

“It’s probably changed the dynamics of the family”
Most people felt that their relationship with their parents was different to what it might have been if they didn’t have a sibling with ASD. Several people felt very close to their mothers; as one person said, “We’ve been through the thick and thin”. One woman thought that her parents found spending time with her “a lot gentler than with my brother”. 

 

Graham has a close relationship with his parents but also feels their family life has been...

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Age at interview: 24
Sex: Male
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Yes. I think we don’t spend as much time as a family unit as maybe we would if Richard was normal. And they didn’t have to look after him so much. I think we would have spent more time together. So the result I think like mum would spend a lot of time away and as a result dad had to spend more time at work to kind of support, when she had to like leave work. So, yeah, I probably, yeah, I think it’s definitely, probably changed the dynamics of the family, I think, is the best way to put it.
 
How did you feel when he was getting more stressed when you were younger? Did you feel left out? Did you think you weren’t getting enough attention?
 
Maybe, but again it’s something that you, I would have just got used to. So I would never, I didn’t really go misbehave to get attention or anything. I don’t feel like I ever needed to scream out for attention. My parents have been really good at, yeah, I’ve never felt that I was being left out and they were concentrating on very much on Richard. But to an extent I’m sure that a lot more, they have put, done a lot of hard work to look after him, and raise him, so. But, I mean me and my mum are very close and me and my dad are also very close, we get on… we have lot in common and stuff. So, I have good relationships with my family. But yeah, I think, maybe, I think, as I said before there’s like a push and pull, I mean because of Richard, me and my mum talk a lot, about in depth things like that, and we’re very close and I can tell her anything that’s bugging me about stuff so. In the end, in the same sense I think maybe it’s pulled us together in maybe more, in certain circumstances but I think because like a family, like we haven’t gone out and done like, independent holidays and gone out. And me, Richard and dad, have only recently started like going to pub together, as such, because, he hasn’t really wanted to do that before, but he’s growing up a lot at the moment. So it’s nice to be able to go and do things like that.
 
 

Eloise feels she has a “more kind of adult to adult relationship” with her parents.

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Age at interview: 18
Sex: Female
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I don’t think that I have the same relationship with my parents had I not had problems, and had [brother’s name] not had problems. I think, the times when I probably would have gone shopping with my mum or, or something, just things like that, or kind of those times didn’t happen as much as they would have done, if, had everything, if things had been different. But I don’t, I’m not as, I think I probably see my parents differently to how other people seem to think that their parents can do everything. Like I have friends who think that their parents have the answer to everything. But I don’t know if that’s normal at 18, but I definitely I don’t know. I think I’ve probably had more of a kind of adult to adult relationship with my parents, even when I was a child. Like… 12, or 13 or something, rather than kind of getting to18 and suddenly realising that my parents are people or something [laughs].

One person said she felt jealous of the relationship between her mother and brother, and often ended up going out more with her father. Others felt that a lot of their parents’ attention had been focused on their sibling and they had missed out. A few remembered being “resentful” of their siblings when they were younger because of this (see ‘Relationship with sibling’). 

 

Ellie thinks that 80% of her mum’s attention was focused on her brother and 20% on the rest of...

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Age at interview: 17
Sex: Female
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I think she’s been majorly affected, because she is physically disabled. She found it really difficult to actually look after him, because he’s really strong and really big, and I’m nearly five foot one and he’s like five foot five now, at thirteen, it’s ridiculously big and when he was younger, he used to kick off and like she couldn’t hold him. But I think that hurt her more because her son was also disabled and I wasn’t a very easy going child myself. She just, I think she had one of the hardest times, because she had to fight for everything for him just to get help and everything. So I think it’s affected her majorly.
 
And do you think he took up a lot of her time? Did she have to devote a lot of time to all of this?
 
Yeah, I’d say, she still does now. She’s always filling out forms and working out things for down in his care home, and I think it was mostly 80% of her time was focused on him and things with him and 20% was like focussed on like the house and me and her and just rarely anyone else got a different thing with him.
 
 

Lucy feels her parents have been mainly focused on her brother.

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Age at interview: 18
Sex: Female
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Yeah, I guess it would. If we were, if I was lot closer with him, or I mean if he didn’t have Asperger's maybe it would be slightly different. We would be closer and then I’d be close to my family. But because my parents have mostly put a lot of time into him, making sure he’s getting, you know, getting through okay like jobs, money, and that sort of stuff. Then I kind of lose out, I lose out on like, it’s not like attention, but that sort of idea. So that’s why I want to become more independent and I go off and do my own thing, than like stay with the family. And like sometimes friends talk about how, like how they’re like how she wants to go see her family all the same, and how much, because she hasn’t got time she’d rather go and see them, and spend time with them and I’m just like okay. I’m fine. I’d just rather go and see my friends or whatever. But I’m okay with it. I’m just like, well I’m growing up moving on now, so I still go back...And I still like go out for like family meals at the moment and Grandma’s eightieth we went out the other weekend, and that’s when I do like try and stay in touch and stuff, like with grandparents and all that, so.

Other more negative experiences people talked about included dealing with challenging behaviour, having to conform to rigid routines and rituals and the related constraints on family life (see ‘Going out’). In addition to these challenges, a few siblings had health conditions that were related to their experiences growing up with a sibling with ASD. These included both physical and psychological stress-related conditions such as Irritable Bowel Syndrome (IBS), panic attacks and self-harming through Compulsive Skin Picking (CSP). One person said that her health was affected by the situation leading up to her brother going to a residential school.

 

Ellie talks about how the stress she experienced resulted in her becoming ill.

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Age at interview: 17
Sex: Female
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I was really stressed and I got really ill through the amount of stress, and it was just a really hard depressing time.
 
And would you be okay to tell me a wee bit more about that?
 
Yeah. Just like in the end I got a lot of excess acid from the stress, and developed IBS. So I stopped going to school, because I was in too much pain and in hospital a lot of the time. But I still managed to get GCSEs and then it started getting better after a while. I got quite depressed with him going away and it was like I didn’t want him to go so I was upset, but I didn’t want him home, because it was too hard. And it was just a mix match of emotions really. 
 
It must have been so hard.
 
It’s alright now, but, yeah, in the first year of college I had to drop out because I was still really stressed, and still ill, but I’m better now. 
 
 

Sophie talks about how stress has affected her.

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Age at interview: 20
Sex: Female
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Yeah, big time, yeah. Because I, you know, my house is so tense anyway. If I go out, I’m tense, I’m still tense. So I find things difficult as well. But I’m getting better slowly, but it’s been quite tough, because you normally find in siblings that they have panic attacks and different medical things through stress and different things, and I also have CSP, which is compulsive skin picking, which a form of self harming as well. And I do that because I am so stressed. Because there’s been not really any help. For me as a sister, either there’s just nothing. 
 
And have you been able to get help with sort of the things that have arisen out of your experience? The CSP and so on?
 
I’ve had letters from doctors saying, “We could offer you some, you know, counselling and stuff”, but I don’t feel that that’s going to help me, because I can go to the counselling session, I can come home and the feelings are still the same, so I’m still going to be doing it, no matter, you know, what. So …
 

“It’s probably affected me more than I realise”
A few people also described being “frightened” and “scared” by their sibling’s tantrums when they were younger. Another said she has managed to cope well with life despite “being raised amongst chaos”. One young woman, who had both brothers and a mother with ASD felt that she was always trying to keep up with her family.

 

Jenni says that when she was a child, she was always aware that her brother could “attack”.

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Age at interview: 18
Sex: Female
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And I’d always have to have a phone near me. So in case my brother kicked off I could call my dad straight away. So that kind of, you’ve got this phone sitting next to you as a constant reminder of what could happen. It’s a bit, it’s kind of difficult to get into like saying you’re playing Barbies, and you’re sort of like, my brother could attack at any moment. That’s a lovely thought. Obviously I couldn’t have friends over very often. And I couldn’t go out very often. Because it was like the norm, like your house, other friends house, your house, other friend’s house. So it would be like my house, my friend’s house, two months, my house. And obviously because I had to be in at certain times stuff like that.

 

Flick sometimes feels left out because her mum and siblings have ASD and she does not.

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Age at interview: 21
Sex: Female
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I...because all three of them are like really intelligent and stuff, I kind of feel like I’ve got to push harder at certain things. Like uni… Like my mum’s just finished and she got a 2'1 and I really want to get a 2'1 but I don’t think I’m going to get anything higher than a 2'2 so I feel like I have to push myself more, so I can keep up and make everyone proud and stuff. I’d really like to make everyone proud.
 
Do you feel the odd one out in your family then?
 
Sometimes. But then again I think that’s me just being insecure.
 
Last reviewed August 2018.
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