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Having a sibling on the autism spectrum

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Information about health conditions can be important to some people; answering questions and providing them with reassurance. The people we talked with had different feelings about information relating to autistic spectrum disorders (ASD). Some were very keen to find out as much as they could, while others felt that they didn’t need to read anything about it because they lived with someone on the spectrum. Some people said they would have liked information aimed at siblings when they were growing up. 

 

Amy would have liked to learn from others’ experiences.

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Age at interview: 17
Sex: Female
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I think if we met... sort of like, find out what it’s like for other siblings maybe of autistic sort of children. I think it would be interesting to, yeah, definitely find out what it’s like for them, because there’s stuff on the internet, like symptoms of autism and like that sort of stuff, but there’s not much about actual real lives to do with what it’s like to live with autistic people and like, to have an autistic brother or sister.

Parents were often the main source of information, either directly through giving them relevant books to read, like My Brother is Different, or indirectly through hearing autism talked about at home. Some people said they tried to read books they found lying around at home when they were younger, but these were difficult to understand as they were aimed at adults. One person didn’t want to bother her parents with her queries because she didn't “want to get in the way”, so she read what she could find.

 

Jenni tried to read some of her parents’ books when she was younger, but she couldn’t understand...

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Age at interview: 18
Sex: Female
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I tried reading a couple of my parents’ books that they’ve got, I mean they’ve got hundreds of things but I just thought I’d like… because obviously when he was around all that much I wasn’t much older than he was and although I like, at the time I liked to believe I was very, very mature for my age and I knew everything about everything, I didn’t understand a word of it. I understand a lot more of it now and I’m still quite interested in it, but it’s not so much, I must know everything. I know quite a lot I just sort of absorbed it from the environment because both of my parents have been very heavily involved in special education and stuff like that and the local special needs schools. So it’s things like that. So, I'm like a sponge [laughs].
 

Steph can remember “forming an opinion about what autism was” when she was a child, but doesn’t...

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Age at interview: 26
Sex: Female
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So I can just remember forming opinions. I can’t remember where they came from. I’m sure they’ve grown up and changed all the time, of course they will have. But I mean general opinions about autism have grown up and changed in the last twelve years anyway. 

Other sources of information were school or college, the internet and talking to other siblings at support groups. One person found information on the internet was “quite biased” and she didn’t know how reliable it was. Several people had read 'The Curious Incident of the Dog in the Night Time'. One person read this with her class and was able to use the opportunity to tell her friends about her brother’s autism while another person questioned whether her brother was autistic after reading it. 

 

Lucy read ‘The Curious Incident of the Dog in the Night Time’.

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Age at interview: 18
Sex: Female
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But I think I also did read ‘The Curious Incident of the Dog in the Night Time’. About that. That was one of the book I did read, I was able to read that book, and I can be like...obviously it was like... quite a few people. And I said, “Yeah, I read that, my brother has autism.” Bringing it up. So sometimes it’s quite like a novelty to bring it up or something. 
 
And how do people react when you bring it up?
 
There wasn’t like such a big reaction or anything. It was just like alright, okay. You know, they’re, they’re indifferent really so it’s not much. There wasn’t like, “Oh my God! Or anything like that so.”
 

One person, who worked as a health professional, kept up-to-date with current ASD research by reading journal articles. She said it was “nice to be able to read from a personal interest of my own, and to develop my work knowledge at the same time”. Another said that her brother made her read information he found on the internet. She felt that it both reassured and helped him, but again questioned the reliability of online information. 

The type of information people wanted varied. Some wanted to hear other experiences of living with a brother or sister on the autism spectrum, while others wanted more factual information, such as books by Tony Attwood. 

Several people said they would have liked more information during their childhood, or at least have it available if they wanted it. One person said she would have liked information about different periods in her brother’s life, such as puberty or becoming an adult. One person described the information available to her as “condescending and embarrassing” and another said that what she read was “too in-depth” for a child. The sibling section on the NAS website was more about autism than Asperger syndrome and so less relevant to one person.

 

Jenni thought that information should be age-appropriate.

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Age at interview: 18
Sex: Female
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Yes. I would have, particularly in a way that I would have understood when I was younger. The best I like kind of found for siblings was this book called, ‘My Brother’s Different’. And it was just, I think I read it when I was about eight and it was aimed at about eight year olds and I was just reading it like what the hell is this? Because it was like one of those. It was like written in the same sort of format as like, ‘My brother is different because this, this, this, my brother’s different this, this, this.’ And it was just sort of like, wow, who wrote this?
 
Did you think it was a bit childish?
 
It was condescending and embarrassing and it was just sort of like, for me, and that was the only book I ever really found. I mean I think I found one that was more aimed at probably siblings my age, but the odds are that, like the average age of diagnosis is when they’re about two-ish and most siblings aren’t going to be like ten, fifteen years olders. They’re going to be two years, three years, four years. And I, you know, I would like to have had information that I could have understood, because it was just, I didn’t really understand a lot of what was going on again, but then again I didn’t really question it, because it was just part of my life. I have to deal with this. So I would have liked to make it work in this situation, definitely, because there were so many times, where I just felt like I was completely alone and no one else was going through what I was going through. 
 
 

Sophie felt that the information she received was insufficient.

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Age at interview: 20
Sex: Female
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My parents gave me books on it. I read them through, but I wouldn’t necessarily... I didn’t want to believe it, kind of. I didn’t want to believe that [brother’s name] had a problem, but when he was diagnosed I was only five, and I was just starting primary school, and you know, that’s when you build up friends for life, and you go out on, you know, sleepovers and stuff. But I didn’t really have that. I had no information really, apart from the books that my parents gave me, I think. It’s too in depth for a five year old to take all that on board and... But I picked it up pretty quickly just through watching [brother’s name], and being indoors all the time, and watching what he’s like. And his behaviour patterns and stuff.
 
So he has sort of educated you about it?
 
Yeah. You, you know, people can write books and books on Asperger's Syndrome, but you have to live with it to understand it, and to, I don’t know, to really grasp it. You can study it for years and years, but unless you live with it, you won’t know half of it so…
 

The reasons for seeking information varied; some wanted to gain a better understanding of why their sibling did the things they did and wanted to try to work out which bits of their siblings’ behaviour could be characteristics of ASD. A few people wanted to gain knowledge about ASD because they felt responsible for educating others, such as teachers, relatives and friends, about the condition. One person read more about Asperger syndrome when he started his job as a Learning Support Worker, whilst another searched for information about autism when her daughter began to display what she thought were autistic behaviours. Others felt reassured hearing about other siblings’ experiences and realising that there were other siblings with similar experiences.

 

Steph had to educate a school friend about what autism was.

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Age at interview: 26
Sex: Female
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I can remember one of my friends at school, because I’d started to be kind of to be open and honest about, you know, James has been given a diagnosis of a learning disability, of autism, and you know, saying to my friends, “Oh James has got a disability. James has got autism.” And one of the girls saying, “Well he’s not properly disabled.” And I can remember kind of coming back and saying, “Well what do you mean?” And she said, “Well he’s not in a wheelchair.” I said, “But children with autism don’t even sometimes talk and sometimes don’t even get toilet trained”. And I can remember kind of trying to change people’s opinion about autism then, so I must have known some things. I must have been learning some things. I don’t know whether that’s just what Mum and Dad were telling me or just kind of what I was absorbing as well.

The desire for information changed over time; some felt they had reached a point where they didn’t need to learn any more. This was particularly the case for people who no longer lived with their siblings.

 

Graham doesn’t think about autism anymore, and doesn’t need to know anything more about it...

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Age at interview: 24
Sex: Male
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I don’t really think about it anymore. When I was younger my mum used to have stacks of information. I know enough to get me by, kind of thing. I even feel now that I don’t really need to know anything more because Richard’s Richard now. It’s not that some… he’s growing up and he’s obviously changing and maturing, but even if he stayed at his level now it wouldn’t be an issue for the rest of his life, so, I don’t feel like I need a anymore, but when I was younger, I found that useful and I did have information when I was younger.
 
Was that information geared at being a sibling or was that just general information?
 
No it was just general information. There wasn’t anything geared at being a sibling.
 
 

Ellie found information reassuring but “it didn’t feel right” looking for information with her...

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Age at interview: 17
Sex: Female
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Have you tried to find information about autism?
 
No. I’ve only ever really known anything from him and just my mum really. When you have him there, you don’t really want to look it up I suppose, because it’s just in the next room. It sounds really awful to say that you want to look up autism, but it’s because that is him. I don’t really feel right, looking up something about him. I can’t change it. So there’s no point even bothering about what it really is. So I have no idea what it really is.
 
Do you think that you made a choice to learn from him, to learn about him, rather than to learn about your autistic brother?
 
Yeah. I definitely feel that I’ve learnt from him, what autism is, not what autism is and then comparing it to him because every one of them is different and they do have different things. They’re all different, you know, and I’ve seen a lot of different autistic children and they’re all different and they’ve all got their own personalities. You can’t compare them, so there’s no point, for me anyway to look it up I guess.
 
 

Damian needed information for his job.

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Age at interview: 29
Sex: Male
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So you think your brother kind of led you to doing the work you do now?
 
Yes, oh yeah, definitely.
 
Have you tried to find out information about Asperger's throughout or life, or when was the first time that you really started to look for it?
 
I first sort of read about it and looked into it as I was starting this job.
 
When was that?
 
Sort of been about two years ago. Because each case is different. So I thought I’d get a wider sort of knowledge of it. 
 
But you didn’t feel at any point when you were younger that you needed to know about what Asperger's was? No?
 
No. I just needed to know about [brother’s name], you know, I was living with [brother’s name], and I needed to know what was, what was what was best for him, you know.
 
And do you think that you would have liked to have information when you were growing up about what Asperger's was?
 
I think it would have helped, yeah. There’s a lot of things that he did, I wouldn’t know why he was doing it. I think if the information was here, I would have said, “Oh right, okay, that’s why he’s doing it. This is his Asperger's Syndrome.”
 

“You have to live with it to understand it”
Some people had no interest in information about ASD. They felt that the autism spectrum contained such a range of different people that information would not be relevant or useful to them. As one person said, “information would miss out all the little bits... it can’t tell you what your brother or sister’s little rituals are”. Some also felt that knowing more about ASD could not change anything in their lives. It would not change the way in which they treated their brothers and it would not change the fact that they had autism. 

 

Flick thought that knowing more about autism would not change how she felt.

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Age at interview: 21
Sex: Female
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Do you think you would have liked to sort of get involved with a sibling support group when you were younger or not?
 
Well I didn’t really know about autism when I was younger. I only started hearing about it in my mid to late teens. So it would have been irrelevant and I probably wouldn’t have known what was going on.
 
Would it have helped or would it have made your life different if your mum had been diagnosed earlier do you think or not?
 
Probably not. I assume I would have been told in some way, but I wouldn’t have really known what it was and I’d just have been like, “Okay. Oh, something shiny!” And then just gone about my stuff and again not really looked at anyone any differently. 
 
 

Katherine thinks reading about autism would be unnecessary as she has got a case study at home.

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Age at interview: 21
Sex: Female
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I think it doesn’t matter what people tell me. It feels that I’m living with the person, so, if I was to read a book or go on the internet and they told me how I should be around, I don’t know what information I could gain that would help. They couldn’t tell me how to be with him or what could be helpful, because I’m the person, I’ve grown up with him. And he’s older than me, so he’s always been there. So there’s nothing new I could learn. And I suppose it’s something that’s different for everyone as well. So I’d been reading about something quite generalised instead of something specific to my brother, which couldn’t be helpful. It would just be teaching me about a problem that people have, when I’ve got a case study. So it’s unnecessary I think.

 

Marti felt that that information could not teach her about her brother.

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Age at interview: 20
Sex: Female
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I remember getting a book when I was really little called ‘My Brother has Autism’. I should think it was sent to us by the National Autistic Society or something. It didn’t really explain what autism was because it was for young children. And no I didn’t really have much information. But you know, mum works, worked in like a play school for disabled children. So mum was also very aware and had knowledge of the subject. But to me it’s just always been there, and I’ve not so much read up on it or anything, I’ve learnt from experience as he’s grown up. I never had any information when I was little. All I knew when I was little was that he was special. That’s pretty much it.
 
And do you think you would have wanted any particular type of information?
 
When you’re so young, I don’t suppose it really matters. You just need to understand that they’re different, and won’t answer you back if you ask them a question. I don’t think I really needed any information. I just learned from experience because at the end of the day, every autistic person’s different. What applies to my brother might not apply to someone else’s brother or sister.
 
A few people have said that to me that they’ve preferred just to learn from their sibling what they want. And now do you think you would like any more information?
 
Not really. I think I know my brother pretty well, and the information wouldn’t know my brother pretty well. Because the information that would be given would miss out all the little bits, the information can’t tell you what your brother or sister’s rituals are. It’s very individual. There can be some generalisations, but only you and your parents know your brother, sister, child, more than any information that can be given.
 
Last reviewed August 2018.
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