A-Z

Having a sibling on the autism spectrum

Thinking about cause

The cause of autism is still not known, though current thinking is that there are probably several contributory factors, including genetics and environmental factors, rather than one single cause. “The exact cause of autism is still being investigated. Research into causes suggests that a combination of factors - genetic and environmental - may account for differences in development.” (NAS 2016). Many people had wondered about the causes of autism and a few had actively tried to find out more information about the condition. Some felt it was probably a hereditary condition and they thought about the implications of this for any children they may have. Other people said they hadn’t really thought about cause at all. 

 

Steph was surprised to come across someone who thought autism was caused by bad parenting.

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

I don’t think problems. I think I’m occasionally surprised by attitudes and opinions around disability in general. I know...Because I value young people, well I value people so much, whatever their levels and whatever their abilities are and whatever the skills are, it can sometimes come as a surprise to me when people don’t, when people are rude, and that can be surprising and sometimes quite hurtful, even though they’re not saying it about my brother. I think it kind of, it reflects on me like that. I came across a girl not so long ago that asked me what autism was caused by, and if it was due to bad parenting. And she didn’t know that I had a sibling with autism, but it still absolutely surprised me that people still had this thought, this thought and opinion that that’s what it might be, and I was kind of, oh, oh, I thought we were past that. And I wasn’t upset or angry or anything like that, but I was just very surprised and, and kind of re-educated them and kind of said, “Oh no, this is what it is. It’s genetic. It’s, you know, there’s difference in brain chemistry, there’s difference brain structure, that kind of thing. You know, children with autism, it’s a lifelong learning condition, that kind of thing. So I don’t think I ever been, I don’t think I’ve ever come across anything very negative. I’ve been surprised. I’ve had to re-educate people. I’ll always, if there’s a reason to I always say, “I have a sibling with autism.” 

“There are probably aspects of all of us that are on the spectrum”
Some people could identify autistic characteristics in themselves or other family members and several thought there was a genetic basis to autistic spectrum disorders (ASD), although a ‘gene for autism’ has not been identified. The psychiatrist had told one person that autism was “probably genetic but there wasn’t any reason for the rest of us to worry”. Others took the genetic link more seriously and looked into the likelihood of having children on the spectrum themselves.

 

Lucy thought autism was “more of a recent thing” in her family and so it would not affect her...

View full profile
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.
 

Steph had researched her chances of having a child with autism but wasn’t thinking about having...

View full profile
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? Eh, 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 the evidence that was out at that time 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. 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 an option.
 
And this thinking about you possibly having a child with autism, was that something that you 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 baby, I’m quite

Some people worried about having a child on the spectrum, while others said it wouldn’t bother them. Those who worried thought about the implications for caring for their own child as well as their sibling in the future. One person felt sad knowing she could be “carrying a gene that could potentially upset another life”. A few people were emphatic that they wouldn’t have children themselves.

 

Sophie wondered how she would cope with having a child on the autistic spectrum when she was also...

View full profile
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 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.
 
 

Graham did not think autism was genetic, but discussed the possibility of his children having...

View full profile
Age at interview: 24
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
No, that’s crossed my mind. I, we went for some check up I remember, or some talk at the hospital when I was about 11 or 12 and I mentioned it to them there. They didn’t really have an answer for me, I would really know now, but it’s something that yeah, that does worry me, a little bit. I don’t know what the answer is really. I don’t think it would give me a heightened chance, but at the same time I know that once you’ve had one autistic child the chances of having a second is like multiple, up kind of thing, so… it’s something I’d like to look into more, but I’m not near having children yet so it’s nothing that like plays on my mind everyday or anything so. But no that’s definitely something that worries me.
 
It’s interesting you raised it quite young isn’t it?
 
Yeah, yeah. I remember, yeah, it was, I must have been like 11 or 12 or something. Maybe even younger, but I remember speaking to my mum about it when I was younger before that as well, and saying that does it make, does it mean that it’s like in my genes as well or something, kind of thing. 
 
Do you think it is a genetic thing?
 
I hear a lot of stories about what they think causes it. I don’t think it’s genetic, no. I think it’s random. I think if it’s genetic there would be links to two generations and I don’t think, there’s nothing through our generation line or anything. And, I think you’d also hear more about it now, I think, where people are having children who have had autistic brothers and sisters, and it would come out and I think there’d be more studies and more information on it if it was true. I’d hope.
 
 

Katherine was unsure of the hereditary nature of ASD and discussed it with her friends. She would...

View full profile
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.

One woman, who also had a son with learning difficulties, had taken her daughter for genetic testing, but the blood tests were clear. Her mother had always said that her brother had been deprived of oxygen at birth. 

“It’s just something I would take in my stride and adapt to”
Other people thought that if they had a child on the spectrum, they would be able to draw on their experiences of growing up with their sibling. Other people didn’t think about it; either they weren’t at a point in their lives where they were thinking about having children, or they thought there was no point in thinking about it.

 

Jenni says there’s no point in worrying about it; “just cross that bridge if it comes to it”.

View full profile
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.
 

Amy initially thought she would not like to have children, but changed her mind because of the...

View full profile
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.

Last reviewed August 2018.
Last updated August 2018.
Donate to healthtalk.org
donate
Previous Page
Next Page