A-Z

Having a sibling on the autism spectrum

Thinking about the future

We asked people how they felt about the future. Their thoughts focused on what their sibling’s future would be like, in terms of fulfilment and happiness, and what sort of role they themselves would play in their siblings’ life. Some also thought about their own future and the possibility of having children on the spectrum themselves. One person, who was slightly older, worried about what would happen to her sibling when she was no longer able to be his guardian. 
 
“I think the hope is that university will go fine”
It was difficult for the younger people we talked with to have a clear picture of the future, because they could not know how their siblings would develop. As one woman said, “It’s just like any fifteen year old person, he’ll grow up and change, and my expectations for his future will grow up and change as he does”. Some people were fairly sure that their siblings would need full time care in the future, particularly if they were already in residential care of some sort. Other people were less sure about this; they felt there was a possibility that their sibling could live independently, but it was very uncertain. As one woman said, “it’s not the same as caring for a kind of profoundly disabled person or something”.

 

Eloise thinks that her brother could go to university, have a relationship and a family of his...

Eloise thinks that her brother could go to university, have a relationship and a family of his...

Age at interview: 18
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I don’t think, but at the same time I do worry that school will go badly, he won’t, he won’t go to university, which he talks about wanting to do all the time. And I might have my brother living with me when I have my own family, because it, or living, I feel like there is the possibility that he could be quite reliant on, on other people as an adult, but I don’t think that there’s any reason he should be if society adapts to him, because I don’t know if that’s a bit of a, I don’t know. But like he is perfectly capable of doing things and like cooking and cleaning and all that kind of stuff and intellectually very capable. But that doesn’t mean that if things go wrong he’ll necessarily be able to cope. And I suppose I hope that he will be able to and he’ll go and do everything that he should do, and everything, but at the same time I do, I do think about the future where he isn’t independent or something.

“I’d rather live in the present; it’s alright at the moment”
A couple of people said they didn’t worry about the future; they recognised that there may be some implications for them, in terms of care or responsibility, at some point in the future, but while they were young, and their parents were still young, it was not something they worried about. 

 

Steph has thoughts about the future, rather than worries.

Steph has thoughts about the future, rather than worries.

Age at interview: 26
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Obviously I have concerns about my parents getting older and their health if, because whatever happens to them although, obviously it emotionally impacts me, it practically impacts me as well. So, at any time in theory, my parents are in very good health now, but kind of, fifteen, twenty years time, if they’re not practically, if one of them becomes unwell, it will impact me in my work or my boyfriend’s ability to work or whatever. But I suppose it’s kind of, I don’t worry about the future. I just kind of think, if you plan for it, and be sensible about it, what will happen, will happen. Kind of where, where will he live? Will he live with my live with my mum and dad? Probably. Will he live with me? Possibly not, because he doesn’t like me that much. He likes me in very small doses, not long doses. Or he live independently, which will be wonderful, but would be a lot of work for him, a lot of work for my mum and dad, work, well not, some work for me, but to work for Services. So I don’t think they’re worries. I think they’re thoughts for the future. I don’t think I’d sit and worry about the future. Obviously when my mum and dad are either too old or too poorly to look after [brother’s name], I have that recognition that I will take a greater part in his care, but that doesn’t work really. It’s just a recognition.
 
And what will you things will be for him in the future?
 
I really, really don’t know. He’s quite stubborn, but clever young person. He has lots of skills. He can be an absolute delight or he can be a bugger. Depending on his mood. And I will say that of me as well. I can be delightful. Or I can be a bugger as well. So I just kind of think how many people at fifteen know what they want to do anyway? I’m fairly sure I didn’t. So I don’t know. I really don’t know. I think we can only see by watch and grow, watching what he does. What … how many more skills will he get? And what likes and interests will he get, because he really likes Take That and Girls Aloud now, but what happens if he doesn’t like that Take That and Girls Aloud? What happens if Gary Barlow’s not his role model next week? You know. So I don’t know. It’s just like any fifteen year old young person he’ll grow up and change and my expectations for his future will grow up and change as he does too. 
 

“It’s a constant worry, definitely”
Most people, however, said they did worry and, for a few, it was a constant worry that rendered the future “scary”. These worries were both broad worries and more specific worries. For example, people worried about what sort of future their sibling would have, the lack of available support or appropriate provision, and whether or not autistic spectrum disorders (ASD) were hereditary. More specific worries included how their sibling would cope with the death of their parents, and what would happen when their parents or parent could no longer care for them. A few said they worried about the impact of long term care for their sibling on the health of their mothers.

 

Marti and her mum are beginning to look around for some provision for their brother but have not...

Text only
Read below

Marti and her mum are beginning to look around for some provision for their brother but have not...

Age at interview: 20
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
And do you ever think about your brother’s future?
 
Now he’s 18, he’s in his last year of his school. And it’s like me and mum have got work, so what happens to him then? So we’re in the process of looking at college and residential schools, but everything we’ve found so far, might for some but it doesn’t work for him, because a lot of these places are far too able, like you couldn’t expect him to go to a lesson on time.
 
So do you ever think about your brother’s future?
 
Now he’s 18, we’re starting to think of the future a bit more for him, because he’s in his last year at school, and we can’t stay at home and look after him all the time, we’ve both got our jobs, me and mum, so we’ll looking at different alternatives to respite, like residential college that we feel at the moment that these are too… he’s not able enough for them, because he would be expected say to get to lessons on time, and it’s a bit too open, we don’t feel, like he’d just run out of the college or the residential, there’s no gates. Everything’s a bit too open, so we’re not sure yet what’s going to happen, but we have respite, there’s the local residential where he goes two nights a month now which is helpful, but we’re still not sure what’s going to happen, other than college and respite. We don’t feel like we’ve had that much guidance into which happens next either.
 
And would you like some help with that kind of thing?
 
Yes.
 
In what way?
 
Well just all the residentials and colleges are for students who are a lot more able than my brother, well what happens to the less able, the ones that would never be able to be trained up to do a job like planting flowers, which I see quite a lot at these things. He would never be able to have a job like that. He’s not able or has the understanding. So other than college what else is there? I mean we’d have to have someone look after him every day, but I don’t know.
 
And what do you think will happen maybe in twenty years time. How do you see things being then?
 
I can see probably, because it’s not fair on me and mum to look after him the rest of his life. Maybe he’d be living at a residential obviously we’d still be having contact with him and seeing him, but it’s more fair for us to have him, you know, till we are no longer. And so, you know, it sounds horrible, but I don’t think anyone wants to look out for someone forever.
 

A couple of people tried to teach their sibling self-help skills like budgeting, cooking, washing and clearing up. A couple of people felt strongly that their brothers ought to be more independent than they were. 

 

Ellie hopes her brother’s self-care skills will improve because she would “love to live with him”.

Ellie hopes her brother’s self-care skills will improve because she would “love to live with him”.

Age at interview: 17
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Well I’d love to be able to see my brother just live in with someone. I would love to live with my brother even if I was like my thirties and he was too. But if he was able to look after himself, even if he still didn’t talk or he still needed a lot of help, but if he was able just to get his lunch out the fridge and manage to go to the toilet, and then he could live at home with someone. I think everyone would be happier with that. But that’s a long way off yet [laughs].

“I’ve reconciled that my brother will always be a very prominent part of my life”
Some people knew they would be responsible for their sibling in the future and, in some cases, become their legal guardian. Some accepted this and were either happy, or at least resigned, about their role. They anticipated living close to their sibling and being responsible for them. As one woman said, “I’ll always have to put aside some of social life to deal with things”. Others found this prospect “daunting” and were concerned about what sort of level of support their sibling may need. Some felt their mothers provided a level of care that they may not be able to match. They also thought about the implications of this responsibility for their own families and their working lives.

 

Graham knew that he will become his brother’s guardian, but worries because he doesn’t know “what...

Graham knew that he will become his brother’s guardian, but worries because he doesn’t know “what...

Age at interview: 24
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

Yes. Yes, that’s the one thing that would worry me. I think mum and dad are in control of what’s going on and stuff and they’re very up on where he’s going to be and stuff but I’d worry about his long term future. I mean I know I’ll take over guardianship when they pass on. I wouldn’t know at the moment where that would leave me, because, I mean I’d assume he’d be in permanent care at that time or something. But it more ignorant, the fact that I don’t really know what level he’d going to be at when he’s older. I mean I know he’s not going to be able to live on his own, without some form of person looking over him or in some form of community. But again that’s because I’m not really sure where he’s going to be. But that does worry me a bit. Not that I don’t have trust in the National Autistic Society and everything, it’s just more, I wouldn’t know where he’s going to be, so …

 

Steph is “reconciled” with the fact that she will be her brother’s carer in the future.

Steph is “reconciled” with the fact that she will be her brother’s carer in the future.

Age at interview: 26
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I’ve reconciled with that. And kind of longer term, which I’m sure people think, other siblings think about as well, is I’ve reconciled that, I will have James’s care once my mum and dad are too old as well. Or my mum and dad are ill-health and once they pass away, I’ve reconciled that James will always be a very prominent part of my life. So he’ll always I’ll always live near where he lives. I’ll always have to put aside some of my social life to deal with, you know, things. Don’t get me wrong, at the moment, you know, I’m out tonight, I was out last night [laughs]. It doesn’t impact greatly, but I know that at some point it probably will, and that’s okay, because, you know, I think once I got to kind of fifteen or sixteen, I’d kind of had an inkling of that’s, you know, that’s what would happen, and, I’ve had, what, twelve years to come to terms with it, and it’s okay.

 

Jenni found the prospect of becoming her brother’s guardian “daunting”.

Jenni found the prospect of becoming her brother’s guardian “daunting”.

Age at interview: 18
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I know this is like really far in the future, but I know once my parents are gone, I get like, I’m his guardian after that. And, that’s a little daunting. I mean I know, I want to have children when I’m when older, so I know I’m going to have the responsibility of children on me eventually. But when it’s your brother it’s slightly different, particularly when he’s only a year or so younger than me.
 
Why do you think it will be different?
 
It’s because...it’s a different age, and like when you’re a parent, you go, ‘oh I’m not letting you do that because I’m your mother, you can’t really go ‘no, I’m your sister, you’re not doing that’. Particularly to my brother, because you’d probably just get squealed at so.
 
 

Lucy thought her sister would be a better carer to their brother because she “gets on with him a...

Lucy thought her sister would be a better carer to their brother because she “gets on with him a...

Age at interview: 18
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
It will probably be better off her looking after him. Because, like our relationship isn’t that great so if it were me, I would be kind of more like forcing him to do stuff or having arguments so… it would be better like my sister, who like gets on with him a bit better than me so… I mean I could be, I mean I could go back help out just like, “You need do this, you need to do that”. But other than that, you can do it yourself really. Because as I see him, that he is older than me. He is an adult now. He should be able to do those things, even though he can’t.
 

Anne is currently her brother’s guardian. She worried about who would care for him when she was...

Anne is currently her brother’s guardian. She worried about who would care for him when she was...

Age at interview: 54
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
But I can see if I get, as I get more elderly, I’m probably in slight denial now, but as I get towards, God willing, mid sixties that’ll be, I’ve spoken to other carers of that age and then that is their nightmare of who will care as much as we do when we’ve gone? And my brother I... if there’s some talk about everybody, all people having like a passport* so it’s acknowledged, it’s all over country, they can, it travels with them. So maybe I will move him nearer to me with this piece of [talking about passport] you know. And we can get something a bit more supportive in place.
*A passport is an individualised document for people with learning disabilities. It lists important information about the person’s health, likes and dislikes and medications.
 

Some people thought about the best living arrangement for their siblings in the future. A couple of older people had adult siblings who already had established living arrangements; one brother lived in a small supported living community, while the other one lived on his own but with support workers coming in on a daily basis. One woman said she worried about her brother going into residential care as an adult because she didn’t think that adult care was as good as “school care”. 

 

Sophie would prefer to look after her brother rather than put him in a home.

Sophie would prefer to look after her brother rather than put him in a home.

Age at interview: 20
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Being able to cope with [brother’s name] and how he’s going to be as an … well older, he’s an adult now, but older. You know, if his needs change how do I, you know, how do I address them? And my mum she really knows how to handle [brother’s name] really well, because she’s with him 24/7. But I kind of worry about being up to her standard, and, you know, giving [brother’s name] the best possible, you know, that I can, the best possible chance, because I don’t want to let him down, because I know that he will never be able to work or anything for a while, until he gets help. So, you know, I want to go to university. I want to get a good job, so I can support him as well so… And obviously my parents if anything happened to them, I don’t know what I’m going to do to be honest. I’m really, really scared about that.
 
So do you think he’ll be your responsibility in the future?
 
Yeah, because people have said, you know, “You can put him in a home.” But he’s my brother and I don’t want to do that. I love him too much. So if I have a house, you know, I’ll have a little annex built or something. So he’s, or even if he’s just down the road, that I can get in with him within minutes if I needed to.
 
Do you think he would be capable of looking after himself or living alone?
 
I think that’s what we’re trying to aim, we’re trying to get him basic things like budgeting just how to look after himself. He’s really good at the drying up, so we’ve got that one covered. He’s got that covered. But it’s just little things we’re trying to shape up for him to be able to do, if he was to leave home and live on his own. But he couldn’t do that at the moment. But hopefully one day for his own independence and sake he could hopefully do it. But, if not, then it’s not a problem, he’s my brother. So he will be at home with me.
 

“I would hate to take over the care my mum gives”
A few people didn't want to be responsible for their sibling in the long term and didn't see why they should be. One woman said that she would hate to become responsible for her brother and was glad that she was able to walk away from it all by leaving home. She thought that if she got married and had a family, it would be unfair to them if she was also responsible for her brother. In part, these feelings reflected her experience of growing up with him.

 

Alison was unsure if she would become her brother’s guardian or if the local authority would take...

Alison was unsure if she would become her brother’s guardian or if the local authority would take...

Age at interview: 50
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well really I suppose that, you know, what remains of his life, is as happy and fulfilled as possible. I mean fortunately in a way, I mean one thing my parents and my mum did was, she, after he’d been to boarding school, she refused to have him home full time. So he has always been in care as an adult. So he, at least has got somewhere to live, which always does seem quite a suitable, as good a place as you could expect or imagine under the circumstances. So at least I haven’t got to worry about, I might have to, where’s he going to live? Who’s going to look after him, sort of thing, because he was in the care of the local authority. So that’s okay. So it’ll really be more like if he needs anything, having access to the funds and that he has... he enjoys as far as he can the rest of his life. I don’t know how long that’ll be. Since he’s been an adult he’s also been diagnosed with epilepsy. I don’t know whether he had that at all as a child. But anyway that’s since been diagnosed. And I don’t know what other health problems he might have. He’s very overweight because eating has long been one of his few comforts, so I mean, that’s not good from a health point of view, so the long term repercussions of what that might be, who knows?
 
And do you think you’re going to become his guardian?
 
I don’t know. I don’t know what my mum’s Will says about that. But it might be, actually, that the local authority is the guardian. I don’t know actually.
 
And how would you feel if you did become his guardian?
 
I wouldn’t object. I would then try and find out what that involved. What I’d need to do, and try to make sure I did that.
 
 

Katherine would not like to “take over the care” of her brother because of the negative...

Katherine would not like to “take over the care” of her brother because of the negative...

Age at interview: 21
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
We’ve talked about this as a family. I’ve said I won’t. I don’t want to do that. He has visions of perhaps moving in with me or having an annex on top of a garage. I’ll live with my husband and children, and he will live above the garage on his own. And I don’t want that at all.
 
Why is that?
 
I would hate to take over the care my mum gives. And if I had a family, I’d hate to inflict it on them when it’s been such a negative thing in my life. I don’t have to. I’d just like him to want to live a life or to move out of the family. Go and live with friends...
 
 

Ellie is glad that her brother is in residential care and will probably remain so. It means she...

Ellie is glad that her brother is in residential care and will probably remain so. It means she...

Age at interview: 17
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think he’ll probably stay there until he’s nineteen anyway and then adult care. But I think he’s probably going to be in care for a long, long time.
 
And what do you think about that?
 
It’s, kind a sad, but its better in a way, which means that I can actually try and get on with my life in a nice way and like my mum can and my dad can. While he can improve all the time, because there’s people actually being paid to look after him, whereas we have to fit it in, and it’s like whenever you go in to see him, you always get rewarded by it now. I think it is an improvement, but of course it’s still sad that he has to be in there.
 

“I don’t know whether I want to have children”
Many people had thought about the possibility that ASD was a hereditary condition. They thought about what this might mean in terms of having children of their own. Several had decided that they didn’t want to have children because they worried their children may be on the spectrum. Their experience of growing up with their sibling meant that they had an understanding of what life was like for family members. 

 

Sophie feels “sad carrying a gene that may upset another life”.

Sophie feels “sad carrying a gene that may upset another life”.

Age at interview: 20
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Just thinking about the future again, do you ever worry that you might have children who have Asperger's Syndrome?
 
Yeah, I do, yeah, it worries me. Because it’s more common in boys than in girls, so if I have a son that’s got Asperger's as well how am I going to cope with the child and my brother with it as well? Yeah, I think it runs in my family as well so. I’ve got to be quite careful. I’m quite worried about it so my mum. But I would like kids yeah, but I don’t, I don’t know what I’d do if... Obviously I’d just get on with it, but it’s quite sad knowing that I could be carrying a gene that could potentially you know, upset another life really. So it upsets me. Yeah.
 
Yeah, and you don’t think it’ll affect your desire to have children?
 
I think it’s kind of made me think more into it, you know, if I really want kids, do I just go for it, or do I, you know, think about my relationship with my husband or anything like that, you know, it kind of, I don’t know, it makes you think about all sorts. Because I’ve seen how my Mum struggled and I don’t want, that sounds awful because I’m going to look after my brother, but she is a selfless person, given up everything and now she’s paying for it, but you can see it’s affected her and I don’t really want to be that unhappy when I’m older so, yeah. I think about it a lot. Yeah.
 
 

The thought of having a child like her brother “petrifies” Katherine.

The thought of having a child like her brother “petrifies” Katherine.

Age at interview: 21
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Yes. I said to my friends, and they say “Why would they?”, yes, that would petrify me. I don’t know what I’d do because its strongly influenced my … I’d really have to consider having children. I don’t know how hereditary - is that the word? - It is. But if I had a child that ended up like my brother I’d want to smack myself, and it’s something you can’t predict, and I’d hate to feel that disappointed in the child, because I know that’s what I would have been doing. If I’d known that there was that possibility. So to have a child with that in mind and then if became true, I’d feel terrible about having the kid, which isn’t what everyone wants.

 

Steph doesn’t know if she will want children in the future but she has researched the risk of her...

Steph doesn’t know if she will want children in the future but she has researched the risk of her...

Age at interview: 26
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I don’t know whether I want to have children. Because not because of James, but I have a one in twelve chance of having a child with autism, because of the genetic relationship I have. And I can’t, I think that would be very difficult for, to deal with. But at the same time, I don’t think I’d have had children at this age anyway, because I like to spend my money on mini breaks.
 
How do you know that you have a one in twelve chance of having a child with autism?
 
How big headed am I going to sound? I know a lot about autism' because of having a sibling with autism; because of being a specialist speech and language therapist dealing with children with autism; because I’m interested in autism, I do a fantastic amount of reading. And while other people are sitting reading kind of Heat magazine on the train, I usually have some kind of autism journal in my bag, because I’m very weird like that and probably slightly obsessive. And I know the genetic relationships. And I know because I have a sibling with autism … The general... the Bird Study in 2006 was it? There’s one every one hundred and twenty five people in the UK that are given a diagnosis of autism spectrum condition. Not core autism but an autistic spectrum condition, and I have a one in six... My chances of having a child with autism are six times that of the general population because my sibling has autism. So if you just do that maths, that’s a one in twelve chance of any child I have being affected by autism spectrum condition. Not that I would be horrified to have a child with autism, because I wouldn’t. But I kind of think because of, it would, it makes me think. It’s not that I don’t want to have a child or, apart from I don’t want them to take away my mini break money, and it would terrify me, because I’m so incredibly immature anyway. But I think it would be, if there was a time I was ready to have a child, it would be something I thought about and it would have to kind of look at the research and evidence that was out at that time [laughs] and kind of think, well, what are my likelihood and how can I decrease it if there’s any way? And that kind of thing. So … it’s not something that affects me right now. But it might affect me in the future.
 
And you obviously didn’t go the doctor to get tested for your likelihood of having a child with autism?
 
Oh no. There’s no kind of, there’s no kind of genetic testing available for autism at all at the moment. Most children that are given a diagnosis of autism are tested for Fragile X syndrome to make sure that it isn’t that genetic condition, which I think does have inherent patterns, but I’m not sure. But, while there are studies looking at kind of the genes for autism, and the genome for autism, and there are twin studies and siblings studies going around the genetics in autism, there’s no kind of test available at the moment. And it’s something that it might change. You know, it might change before I have children or before I think about having children. But certainly in the here and now, that’s not, that’s not an option.
 
And this thinking about you possibly having a child with autism, was that something that you’d thought of and then decided to look into or was it just something that just came up in your reading and then you thought oh that might apply to me? 
 
It’s something that I think I was in a seminar one day, looking at the genome, at the causes of autism, and I kind of just worked it out and filed it away in my head, that this, as I say I’m not massively child-orientated. If you see me at work with a b

A few people said the opposite, i.e. having children of their own with ASD wouldn't bother them because they knew what it was like.

 

Amy’s views of having a child with autism have changed. She thinks it would be okay because she...

Amy’s views of having a child with autism have changed. She thinks it would be okay because she...

Age at interview: 17
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Yes, that’s what my initial thoughts were if, I thought, I don’t know, I think my views have changed. I thought at the time like if it was hereditary then I wouldn’t have children at all, but now, I think I would. Even if they were autistic. I think it would be okay, because, because of having Harry as my brother, I sort of like understand what it’s like, but yeah. So I think I would have children.

 

Having a child on the autism spectrum is something Lucy would take in her stride.

Having a child on the autism spectrum is something Lucy would take in her stride.

Age at interview: 18
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I’ve never really thought about that would happen, because I don’t think there’s like other cases in our family where there has been autism, since it is more of like a recent thing. Like you wouldn’t back, like grandparents having autism or whatever because people just didn’t know about it then. So I guess if I did have a kid and they kid have autism I would know a lot more about it and have to deal with it. But I wouldn’t worried if they did or not. It’s something that I would just take in my stride and adapt to.
 

Jenni doesn’t think there is any point in worrying about having a child with autism; you don’t...

Jenni doesn’t think there is any point in worrying about having a child with autism; you don’t...

Age at interview: 18
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Yes. I kind of do, but just like, I don’t, there’s no proof that its genetic and there’s, it’s quite unlikely, I mean if I’ve got a brother whose autistic I’ll have a child, because it doesn’t seem to happen that often, though it’s a lot more common in boys than girls. So...what’s the point…? I can’t remember. Probably outdated statistically. But then I also worry, because like, about other genetic things in my family as well. Because like my mum had a brain tumour when she was pregnant with my brother. So I sometimes worry, oh is that going to happen to me, or it could happen to one of my kids. There’s no point in really worrying about it, because you don’t know whether it’s going to happen or not, and if it does happen, there’s nothing you can do about it. Just cross that bridge if it comes to it really.

Last reviewed August 2018.
Last updated May 2015.

 

donate
Previous Page
Next Page