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Having a sibling on the autism spectrum

Messages to others

We asked people if they had any messages for other siblings or health, education and other professionals. 

Several people had messages for other siblings; one person said that it was “not the end of the world” and was “nothing to be ashamed of”. Another said that she has “learned the hard way” that when you have a sibling with an autistic spectrum disorder (ASD), “you’ve got to go round his needs rather than your needs”.

 

Jenni wants others to know that things do get better and they should find “the thing that makes...

Jenni wants others to know that things do get better and they should find “the thing that makes...

Age at interview: 18
Sex: Female
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I think no matter, like no matter how bad things get. No matter how much you feel like there’s no possible way you could think any lower or that. There’s, you wish you have a different life. Even at that particular moment, yes, it might feel like it’s the absolute worst thing in the world, and you would do anything to get out of that situation, but give it, give it a day, a month, a year, a decade and it will feel. You will get to the end of it and you’ll think, it didn’t kill me, because you know, it could have been worse. There will always be someone who is feeling the exact same way. There will always be someone who is feeling the exact same way. If you think how many, I mean autism is not that uncommon, so siblings. You know, the odds are there’s at least one sibling to every child, may be typically because I know a family who has two autistic children, but you’re not on your own, because it’s a statistical impossibility basically. But...
 
You really need to find them.
 
I mean I’ve like, because my mum’s friends got a kind of similar situation with her kids, like it’s an older sister and a younger brother, and really if things do feel like, I hate my life, I wish it was different, you can’t actually change it, short of like committing murder or something which is a little extreme. So if he really feels that bad, I just suggest finding the one, like finding the thing that makes you feel more at home. Like for example, I lost myself into fantasy worlds with dragons and diplodocuses, witches, wizards, and various things like that. Then the little girl I know, she likes video games. She’ll lose herself in the video games for hours and its one of her favourite things. You just have to find that thing that helps you, you know, I mean for some people it would be music, some people its writing, reading, video games, it’s just finding it, and once you find it, everything should become more much easier. Or at least that’s what I found through seeing… that alcohol is not a good idea.
 
 

Lucy says that her relationship with her brother is more “practical” than “emotional”.

Lucy says that her relationship with her brother is more “practical” than “emotional”.

Age at interview: 18
Sex: Female
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Having a sibling like my brother is different. There was a different dynamic in relationship. There’s, you’re not, you wouldn’t be having a sit down and chats for hours. It’s more of a, more logical and practical relationship I would say. Not quite like emotional attached or anything. That is more what the relationship is like, but at the end of the day you are still brother and sister, so you will, you have that attachment and you will have to go and do and stuff together. So you do all like the practical things, you do with like any brother or sister. But like the depth of like emotional or attachment would be a lot less, I would say.
 

Alison says that you need to remember to put your things away in case your sibling breaks them!

Alison says that you need to remember to put your things away in case your sibling breaks them!

Age at interview: 50
Sex: Female
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Well it’s not just thinking about yourself. You’re always having to think about somebody else as well. Not always in a positive way [laughs]. Not just thinking about making sure their needs are met, but also making sure they don’t, thinking about what they’re, what they’re inclined to do, and making sure that’s not going to disrupt your life too much. So you’re always conscious of that at the same time as you’re dealing with your own life because you always have to remember to put some of your things away that he might want to come and fiddle with or break or something. It’s that sort of thing. You’re always having to bear that in mind. So there’s always the two things to think about. And everybody else probably just had the one. 

Some people described what it was like to have a sibling with ASD. One said' “It can be difficult, but I wouldn’t say it was really different from having a normal brother or sister”. Another felt differently and said that “it’s completely different to what it is like to live with anyone else”.

 

Steph says that having a brother on the spectrum is “not bad” it just means that daily life ...

Steph says that having a brother on the spectrum is “not bad” it just means that daily life ...

Age at interview: 26
Sex: Female
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It’s not bad, it’s just different. It just takes a little bit more thinking about and preparing to do things than I think it would normally. I’m not going to say it’s incredibly rewarding, because I’m sure it’s rewarding for other people that have siblings too. My relationship with my brother’s rewarding, but I think that’s because it’s my relationship with my brother, it’s not a relationship with my autistic brother, but yes it’s just different. It takes a little bit more time. It takes a little bit more planning. And it’s certainly not positive or negative; it’s just a thing that happens.

Messages to professionals focused on raising awareness and treating people with ASD as individuals. Some also wanted better provision of services and support. 

 

Anne is her brother’s guardian. She wants to be able to speak to one person who knows her brother...

Anne is her brother’s guardian. She wants to be able to speak to one person who knows her brother...

Age at interview: 54
Sex: Female
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I’d just say I just want to talk to one person. I want to have some, a lot, a good chunk of time and to be able to go into as much detail as I want. And I think currently I know him the best, so listen, you know, listen to me, and open up your wallets really [laughs].

 

Eloise thinks that the process of diagnosis should be faster and that there needs to be...

Eloise thinks that the process of diagnosis should be faster and that there needs to be...

Age at interview: 18
Sex: Female
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Oh teachers, I think there have been improvements because now social educational needs coordinators have to have proper training. But that means that there are ones employed currently that don’t have the correct training. And I think that there needs to be a lot more awareness of, just like there has been with dyslexia. There’s now far more acceptance and awareness of dyslexia in, in mainstream classrooms. But there isn’t with Asperger's and autism. And that it’s not just one area and that definitely each, each person on the spectrum is different and has different needs. I think probably, the biggest problem, and the biggest problem for [brother’s name] is, has been school, rather than, I think, medically he’s been supported really well. As a family I think, I think things could have gone a bit faster in the beginning when my parents were first, really kind of, there’s something definitely wrong here. It took a long time. I think now we’re getting the right support he sees people, my parents see like kind of parental guidance but based around the fact that [brother’s name] has autism. 
 
So that’s good, but when he was first, when we were first thinking, and they were first definitely thinking that there was something that needed, there was something wrong more than just being a bit different, that was quite, it took a long time. He was on a waiting list for a long time and then he saw various, and my parents saw various different teams of people because there wasn’t one big team. It was, he saw a speech and language team, and then he saw the more kind of central mental health team, and I don’t know that that, that my parents really minded that, but it did feel a bit. It wasn’t a panic because it was over such a long period of time, but it was a bit, there was a period of definitely kind of confusion about, and also what to tell [brother’s name], because he was seeing people about speech and language and he was seeing people about autism and I think because there wasn’t, there has been continuity since then. But to start with there wasn’t at all. I think that would have been better. Especially if you think someone might be autistic. But definitely now they’re doing, it’s really good, but school could definitely be better. I think that there should be much more compulsory training for schools about Asperger's rather than optional because there are optional things and his school has not opted to do them so …
 
 

Sophie wants someone to help her brother find something to do that will give him a purpose.

Sophie wants someone to help her brother find something to do that will give him a purpose.

Age at interview: 20
Sex: Female
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Well the first thing I’d say, is, “Are you being serious about helping?” [small laugh]. Because we’ve been so much, you know, where people have said, “Yeah, we’ll help you, and nothing’s been done. So obviously you’d make sure that they want to help, but, you know, just to look at [brother’s name], [brother’s name] as an individual not a group of Asperger people, what they think they might need, because they’ll all different. So as long as they look at [brother’s name] as a person and look at his specification, like what he likes and what he doesn’t like, and what he can cope with, and his anxiety levels, and if they can work around that, and then find him something that he can do, then yeah, that’d be good. Just to get him out of the house, really have a purpose to get up. Because he gets up at whatever time he wants really. You know, he doesn’t lie in bed till like one o’clock in the afternoon, but, you know, half nine, ten o’clock, you know, where he could be in a job or college or something. He isn’t. So as long as there’s a purpose to get up in the morning, you know, feel good about himself that he is alive. He’s healthy, you know, he’s a healthy boy, but he’s just got a condition which stops him doing so much and it’s really sad.


Last reviewed August 2018.
 

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