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.
Flick used to think a lot of her friends' mums were 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 autism 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 of everyone.
Ellie talks about how by growing up with her brother she has become able to see the positive side of everyone.
Jenni explains that her experience with her brother has made her more understanding of both disabled and non-disabled people.
Jenni explains that her experience with her brother has made her more understanding of both disabled and non-disabled people.
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.
Alison talks about how her knowledge about autism was helpful when her daughter was diagnosed.
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.
Flick talks about a college film project that she made about autism.
Steph talks about choosing her career in speech and language therapy.
Steph talks about choosing her career in speech and language therapy.
Katherine says that there is a need in her to help people.
Katherine says that there is a need in her to help people.
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 autism spectrum.
Lucy says that her choice of degree may have been influenced by having a brother on the autism spectrum.
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 when she is feeling down.
Sophie says she has learned a lot from her brother who reminds her that things could be worse when she is feeling down.
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.
Eloise says that it was "amazing" when her brother was happy after school one day.
“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 constrained in some ways.
Graham has a close relationship with his parents but also feels their family life has been constrained in some ways.
Eloise feels she has a "more kind of adult to adult relationship" with her parents.
Eloise feels she has a "more kind of adult to adult relationship" with her parents.
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 the family.
Ellie thinks that 80% of her mum's attention was focused on her brother and 20% on the rest of the family.
Lucy feels her parents have been mainly focused on her brother.
Lucy feels her parents have been mainly focused on her brother.
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.
Ellie talks about how the stress she experienced resulted in her becoming ill.
Sophie talks about how stress has affected her.
Sophie talks about how stress has affected her.
“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".
Jenni says that when she was a child, she was always aware that her brother could "attack".
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.
Flick sometimes feels left out because her mum and siblings have ASD and she does not.
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