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Having a sibling on the autism spectrum

Support

We asked people what support they had received when they were growing up, and what they would have liked. Several people were surprised by this question and said that they didn’t need support. Some people said they had friends they talked to, or that their family were very close. Some people had attended support groups, mostly young carer groups, and they enjoyed the opportunity to mix with people who had similar experiences to their own. Those who wanted support said that they would have liked someone to listen to them who understood their experiences.

 

Flick felt that having information and being part of a support group would not have changed the...

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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. 
 

“It is important for young people to have the opportunity to talk to other people that have similar experiences”
Some people met other siblings of people with autistic spectrum disorders (ASD), sometimes at school or college, but mainly at support groups. These support groups were for young carers, or groups that included disabled children too, and involved different activities or outings. A few people said that it was nice to spend time with people who understood what they were going through, even if they didn’t talk about their siblings. One person enjoyed feeling comfortable with people who were in the same boat. 

 

Marti said that being part of the support group gave her the “feeling that you’re not alone”, but...

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Age at interview: 20
Sex: Female
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He goes swimming every Wednesday. Normally a lot of trips in the school half term and school holidays, like April we went to Legoland. We’ve done trips to Alton Towers, trips to see musicals; I think they went to see Hairspray. It’s nice to have the support of other families. And if something embarrassing happens, everyone there’s the same, so they understand.
 
Do you get support from that group in terms of you know, being the sibling of someone with autism? 
 
Yes, because it’s for the whole family. Any other people, any other siblings. At the end of the day we’re all going through the same thing, and it’s a nice feeling that you’re not alone, and you can go out with these people and not be ashamed, but feel more comfortable, if something were to happen. And you know, you’re with other people in exactly the same position that you are. 
 
And what do you talk to other siblings about? 
 
I can’t answer that question because I don’t go that much. I can’t answer that question, because they’re a lot younger than me, the brothers and sisters that do go. So I don’t, I can’t really answer that question.
 
 

Lucy attended a support group, but she did not find it very helpful because it did not have many...

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Age at interview: 18
Sex: Female
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There wasn’t like any books round then. But I think I remember there was this one lady who was a lot involved with like the autism thing. She set up this like little group thing for people who have siblings and then we’d all go along to it. There would be like a few of us going and talk about things or doing things. I can’t remember much but I guess there were a few of us, and we just didn’t quite click or whatever. We went out for like a picnic and swimming and stuff, but I don’t think we went anywhere. I guess it’s more learning about what other people have to go through and there was similar people. That was really about it, really.
 
How old were you when had that?
 
I think I was still in primary school at the time. So I was still quite young and I think that was the time about when he was, I think when it was at its worst really, when he was younger. So that’s, yes.
 
And how long did it last for?
 
It didn’t last that long I don’t think. It was like a weekly session you go to. I don’t think it worked really out that well, because only a few of us who went, but there was I don’t think it really I had that really much really. But I only just remembered it to be honest. I was like right, yeah, I did go to this thing. So… it didn’t really have that much of an impact. I just thought, kind of thing, “I don’t really know what to do”, but my Mum kind of sent me off to it.
 
 
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Ellie found the support group she attended helpful because she got to spend time with others who...

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Age at interview: 17
Sex: Female
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I think my mum she was part of lots of groups because she needed more information than I did. And you know, just passing it on and just reading little leaflets and stuff. Not like specially about autism, but just different things to like stimulate them, or something. And I never, it’s just, and then I went to a support group for myself and it was more just like siblings with like disabilities and it was just, you learn a lot just from different situations. Like they could have the same problem, but it would just be a completely different situation. 
 
And that was a sibling support group for siblings of people who had any disability? It wasn’t autism specific?
 
No. And like there were just loads of people there. And I made some friends, but that stopped. You just learn a lot you might not be in the worse situation, but you can’t compare a different situation to yours if they’re not the exact same. So you just learn that, you know, you just have to accept it all more. And be more understanding of everyone else.
 
And how long did you go to that support group?
 
I think about six months. But it had to stop for some reason. Nobody wanted to run it. I liked it because everyone there had a sibling with something and you know, we all went there and we didn’t want to talk about it. It was more just that you understood the fact that there was something and you didn’t question it. It was just a nice time. With your other friends there’s always a few questions, but there just everyone understood the fact that you had to just get on with it really.
 
And so you found it helpful?
 
Yeah, I found it really helpful, because, there’s so many like siblings with different siblings themselves, and it’s hard to find someone like that, unless you just put them in one group and then everyone gets on, because they all know the difficulties and I found it really helpful just to talk to someone who might just understand on some sort of level.
 
 

Sophie attended Young Carers and found this helpful. She finds that life is very stressful at...

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Age at interview: 20
Sex: Female
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No. I went to Young Carers when I was about eleven, twelve, thirteen. I went for a good few years. You know, that’s good in itself, and that’s just time where you can take a step back and go and mix with people that, you know, understand you and what you’re going through, but now as I’m 20 there’s nothing really for me, that I know about. I haven’t been, you know, forwarded information. A lot of people have got my number, because they know me as [brother’s name]’s sister, but nothing. I’ve done speeches for people, but there’s only so much you can do really, and no one ever gives you anything in return. So it’s quite, its difficult.
 
What support would you like to have?
 
I don’t know. Just more emotional support really. Someone that I can go to that knows all about Asperger's Syndrome and how hard it is for siblings. Just so I can go and talk about it really, because I feel, all the anxiety and pressure in my house is too much and sometimes I just go up to my room and cry my eyes out. And that is my counselling to myself. But there’s no one I can talk to, that can, you know, reassure me and say, “You know, there is such and such.” “That there is a light at the end of the tunnel for you.” But… there is nothing like that here at all. You know, it’s quite sad, because I’m sure, a hundred percent, that I’m not the only one in this position who needs help as a sibling. So…
 

“I just wish there had been somebody who could have spoken to me and knew what they were talking about”
Having people to talk to who understood what it is like to have a sibling with ASD was very important to several people. One person had been given counselling at school, but said the counsellor was more used to dealing with divorce or bereavement and couldn’t really understand what she was talking about. Another said she would like more emotional support because “the anxiety and pressure in [her] house is too much sometimes”. She felt that she had no one to turn to. 

 

Jenni felt that siblings were neglected when it came to support. At the support group she...

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Age at interview: 18
Sex: Female
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I think there’s plenty of support groups for the parents. There’s so many for parents, and so many for various other types of guardians, but there’s [phone rings] never anything for siblings. I mean I remember thinking right when I was about eight, just like why is there nothing for us. And I mean it is probably just as worrying and disturbing for us as it is for the parents, and the only think that I ever heard about was this, there’s this I don’t really know, it’s like, I guess its day care, but not … in [town name], it’s called [name of centre] or something like that. And my brother used to go there for like when he was still at home, and sort of at [name of school] and he, and there was like there was the parents group, which is called something like [name of support group]. It may be cheesy but I imagine there’s a lot of things called things like that. And there was a siblings group of which there were three of us called Sibs. Imaginatively. And we didn’t, it was just basically ‘oh bring the siblings along and we’ll chuck them in the sensory room and they can just play about’. It wasn’t really, you never really spoke about it, you just had fun with the soft play stuff, which like you will see your siblings play with. But obviously you get to about eleven,. And then it was like, you’re too grown up you can’t do it. Actually I can see why they have so much fun in sensory rooms. I just loved to sit in one for a couple of hours.

“I’ve got a good friend who I can turn up on their doorstep crying”
Several people said they got support from their family or from good friends. They didn’t feel any need for external support. Others said they would have liked some support, or at least to have the opportunity to have support if they needed it. A few reflected that there was very little support aimed at siblings, and one person felt that siblings were overlooked, as all the attention focused on parents. 

 

Amy received support from her family and did not know that support groups existed. She felt she...

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Age at interview: 17
Sex: Female
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Okay and whenever he was diagnosed did you talk to anybody about that in terms of how you felt about it?
 
Other than my family, not really. But we all sort of discussed how we felt together but yeah, it wasn’t a big surprise. Like I said, I was, I had sort of been expecting it so… yeah.
 
And when you talked about it together what was the general feeling among your family?
 
Yeah, I think my mum especially was a bit upset about it, but everyone, everyone, no one was really, really shocked or like surprised that he was autistic. It was just a sort of feeing of well at least now we know what it is, why he behaves this way sort of thing. But yeah, I think it was, it’s been good since he’s been diagnosed because we can sort of understand him a bit better.
 
How did Rich feel about the whole thing?
 
I’m not sure. I don’t, I think he was surprised, but once you, once you get over the initial sort of sort of like the word autistic, I think it has, like almost a stigma attached to it, but once you get over that it was, it was fine really.
 
And what do you think your younger sister thought about it?
 
She was only seven when she was diagnosed I think, or eight. So I don’t think she really fully understood at the time, but like as she’s got older, she understands more and she’s I think she’s alright with it. I think she sort of looks after Harry. So it’s quite nice.
 
And have you ever attended a support group for siblings of people with autism?
 
No. I didn’t know there were such things.
 
And would you like some sort of support in dealing with all of it?
 
I think it would be interesting to talk to other people who are in similar situations, I think, yeah. That would be.
 
 

Steph had a lot of family support, but thought a support group would have been a helpful source...

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Age at interview: 26
Sex: Female
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What support did you have at the time of his diagnosis?
 
Personally, only my family support. As I’ve said before my family are very close. And I had lots of support from my family. But I think being fourteen and being surrounded by friends that didn’t know anything about autism, I didn’t get that kind of support. But that was it.
 
And did you have any other support apart from your family in the interim between the diagnosis and now?
 
No. I’ve had at university and at work, I’ve had colleagues that know things about autism and are interested and will talk to me, and will kind of go “Oh”, and it’s nice to have an educated talked about autism with someone apart from a family member, but nothing kind of professional apart from that.
 
And looking back to when you were fourteen at the time you found out about his autism, what information and support do you think you would have wanted then?
 
I know now there are sibling groups and I don’t know whether I would like to attend a sibling group. But I think it would have been nice to have the opportunity to attend a sibling group and make that kind of decision. I know the NAS do lots of books for siblings of autism now, and it would have be, it would have been nice to have that opportunity to be able to access them. Because even kind of referencing back to something I said earlier when I said my Mum gave me some information about autism, that wasn’t kind of what it was like to be a sibling of a person of autism, that was just autism information. It would have been nice to have the opportunity and the access, but I don’t think, I don’t know whether I would have taken it up, again it’s with hindsight, you know, what can you do? But I think it’s important for young people to have the opportunity to talk to other people that have similar experiences, but saying that my experience would have been so different from somebody else’s experience that, you know, I’m not sure, anyway.
 
 

Katherine thought that her family and friends gave her enough support. She was unsure what type...

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Age at interview: 21
Sex: Female
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None. My family’s enough, or family and friends. But I’m sure there are families that the siblings could benefit from some sort of help. I don’t know what help they could give them because it’s the kind of situation that can’t change. It’s something you’ve just got to grow with and learn from. I’m sure people might do with help. But as I say I’ve learnt as I’ve grown up with it, how to be around it. What to do.

 

Alison would have liked to attend a support group when she was growing up as long as it had been...

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Age at interview: 50
Sex: Female
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And would you have found a support group helpful do you think?
 
As a child that’s very hard to say, very hard to say. It would have depended on what they offered maybe, but it’s hard to know. It might have…
 
Okay so looking back on it now, you would have liked some information and maybe some supportive counselling?
 
Bearing in mind I was that bit older when he got the diagnosis and counselling perhaps wouldn’t be that useful for a sibling, you know, quite a young sibling. But yes, I think certainly some information, some guidance, some counselling. Perhaps a support group, but that would have depended on what it did, if it was just sort of outings and activities that might not have been my sort of thing. Depending on where they went and what they did.
 

“They take a lot of the emotional strain”
Some people said they would like more support to be available for their parents rather than for themselves. They felt that their parents, in particular their mothers, took on significant emotional and practical responsibility for their sibling.

 

Anne thinks that there should be more support for siblings who are carers.

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Age at interview: 54
Sex: Female
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And what support would you like…. In an ideal world what would you like to have for you in terms of support?
 
For me as a carer?
 
Yes.
 
Like so many carers say, “If you sorted out care for the person that I’m caring for, my life would be so much easier”. I do get good support locally from, with my son, I mean I get, there’s a very good carer’s project here. I go swimming, I go, I can go walking with the group.
 
Just like sort of social support?
 
Social with other carers, yeah. And there’s people I can talk to if I want to. And I’ve got a fairly good relationship with people who care for my son. You know, so …we work very well together. But I would like the care managers to be more involved. Their role is always changing, it’s case managing I understand now. 
 

 

 

Damian thought that his parents should have received more help in securing financial support for...

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Age at interview: 29
Sex: Male
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I think there could have been someone to offer my Mum and Dad help. Not so much me, definitely for my Mum and Dad, yeah.
 
Sorry why is that?
 
Because they were very, very stressed having to fight for him for funding and stuff like that. And it would have been nice for someone to be there to point them in the right direction.
 
 

Sophie believed that there should be more support for parents as “they take a lot of the...

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Age at interview: 20
Sex: Female
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I don’t know really like, I don’t know, I think there should be like more support for my mum definitely, because you know, she’s cared for my brother for 20 years, 22 years now. And she wants to see more of life, but there hasn’t been an opportunity where she can, not leave [brother’s name] in respite or anything like that, but where she feels comfortable to go off and do things. Because my mum, she’s quite selfless. She’s give, she’s given up everything for me and my brother. And I think, you know, she deserves more. You know, she doesn’t get credit for what she does, and she does an amazing job with my brother. And I think that there should be more support for definitely parents with, you know, autistic children. Because they do a lot, they take a lot of the emotional strain and especially when they... son/daughter hasn’t got anything. It’s extra pressure on them, and they need time out as well, because I see how it affects my parents’ relationship. They’re not as close as they used to be, yeah, they’re quite, there’s always arguments or disagreements. And it’s quite tense. So I think there should be more support for parents.
 
What kind of support?
 
I think there should, I don’t know really, just like emotional support, you know, my mum can go to somebody who knows about Asperger's or has been in a similar situation. Or just, you know, peace of mind in knowing that [brother’s name]’s in a place where he’s safe. You know, he’s going to be looked, not looked after in a sense, but where she can leave him, and not worry about where he is and what he’s doing. You know, we could have left that with extended family members, but they don’t help so, you know, my mum worries about him being here, you know, if he’s left because he likes to do his soup and stuff, so whether he’s left the hob on or … you know, I want her to be able to go out and see a bit of life, because she’s 58 now, and she’s really conscious of her age now. And it’s sad for me to see that, because I’m going off to college you know, going about my own business and she’s here and, you know, my mum had her first child at eighteen, and she hasn’t really had a life, so I think it would be nice if she could have peace of mind knowing that [brother’s name]’s alright. And she can pop off and do what she wants. Yeah.
 

One older woman, who was her brother’s carer, said that the support available to carers was better than that offered to siblings. 

Last reviewed August 2018.

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