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Having a sibling on the autism spectrum

Jenni: Interview 13

Age at interview: 18
Brief Outline:

Jenni's younger brother was diagnosed with autism and has challenging behaviour and learning difficulties.

Background:

Jenni, 18, lives with her parents and is a student. Ethnicity/nationality: White British.

More about me...

Jenni’s younger brother moved to a residential school when he was 10 and she now sees him once a month. He was diagnosed with autism and has learning difficulties and challenging behaviour. For four years, before leaving home, he took over the living room and wouldn’t let Jenni in there. He also dictated how much the family could come and go because he was very rigid in his expectations. Growing up with him Jenni likens to “living with a ticking bomb without a timer” as her brother could be physically aggressive towards her or her mother. At the time, while she realised that her home life was different to many other children’s, she didn’t think much about it because it was ‘normal’ for her.
 
Jenni’s mother was ill with a brain tumour when she was pregnant with her brother, and Jenni’s dad took on the responsibility of looking after them all, and having a full time job. The impact of this on her parents was more significant than she realised at the time and, in some ways, Jenni regrets being an “angsty child”. Jenni dealt with her home life by spending a lot of time with her imaginary friends and being a bookworm.
 
Now, when her brother is home, Jenni describes how she stays out of his way and he stays out of hers; “kind of like a normal brother sister thing, just without speech”.  Jenni explains how there are times when she despairs and feels desperate when coping with her brother, but she then accepts that it’s not all that bad, she can cope and it could be a lot worse.  
 
We also spoke to her grandparents about their experiences. (See Brian and Lucy’s story)

Jenni had to go to bed before her younger brother because he would get "cranky" if she was still up.

Jenni had to go to bed before her younger brother because he would get "cranky" if she was still up.

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But then again when I was younger, I had to go to bed before my brother, which when you’re about eight you don’t really want to be going to bed at the same time as your six year old brother. But I kind of had to. And …
 
Why was that?
 
Because he’d get cranky. If I wasn’t gone to bed when he was gone to bed he’d just flip. And so I didn’t get to see much of my parents either. So I’d probably see my dad from. I think it was probably from about five, half five until seven and then I’d go to bed. And that would be it. That would be pretty much all I saw of him all day. So I started getting up in the mornings, quite early in the morning at one point to watch Walking with Dinosaurs, so I got to see him. My family has a thing about dinosaurs. Like my brother really likes dinosaurs and I really like dinosaurs. I don’t even know why. So I’d kind of see my parents probably wanted just adult time, just to sit and watch TV or whatever and not have annoying small children running around. So I can’t say I blame them. But I was very grateful when I was finally allowed to like, I’d have to go to bed, but then I could come out again an hour later when my brother was asleep which was good. I was quite happy with that because it meant I didn’t have to just go to bed at a ridiculous time.
 

Jenni's brother becomes "cranky" if she does not attend family meals when she is in the house.

Jenni's brother becomes "cranky" if she does not attend family meals when she is in the house.

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Yes, if I’m in the house I’m supposed to have dinner, otherwise he’ll get cranky because like he knows everyone’s around, but not everyone’s around. Over Christmas it’s like he’s, it’s really odd like, like autistic kids aren’t really supposed to have imagination, so he shouldn’t really be able to like believe in Santa. But he seems to. Because a couple of years ago I was babysitting next door over Christmas on Christmas, well it wasn’t Christmas Eve, but it was his Christmas Eve and he would not settle. Like he goes to bed at about 9 o’clock when he’s here and I was out until about midnight and for those three hours he was just really, really where is she? She’s not in the house? I’m not going to settle. I’m just going to cause as much problems as possible, because obviously he seemed to think that Santa wouldn’t come if I wasn’t, if everyone wasn’t in the house. It was really strange. So I’m now just not allowed out over that time.

Jenni had a "ridiculous number" of imaginary friends growing up, none of whom were human.

Jenni had a "ridiculous number" of imaginary friends growing up, none of whom were human.

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Actually I still kind of, I’m quite a sort of book-wormish type person, and I very much got lost in my own fantasy world. And I had so many imaginary friends, actually, ridiculous. I think I probably have the amount of imaginary friends on my own, than probably the rest of the population of my town does. So [laughs] and they were not exactly normal imaginary friends either. They were never human, ever. One of them, well some of them were dinosaurs, most of them are dinosaurs. I like dinosaurs [laughs]. Diplodocuses. Pink Diplodocuses. I don’t know what goes on in my brain [laughs].
 
And why do you think you had so many imaginary friends?
 
Because I didn’t have any real ones. But … and I always found that like, the world, I could create in my brain, was so much more interesting, than the one that I’m actually in. I’m under no disillusion that I did get lost in this world, because I didn’t like the one that I was in. Like the interesting, some of the worlds I created in my head, they were hugely like, just random things. Like I’d have like, before I got the inter… like because I didn’t get the internet until I was about year ten. I wasn’t aware of like fan fictions, fan art and all of this sort of stuff, but I still sort of did it in my own way. To a scary degree to what people actually do. It’s a little odd, but I’d sort of get lost in like Lord of the Rings worlds, or in Harry Potter or Spiro the Dragon. And I’d just create my own little world and my own little characters to go into these worlds. It’s kind of sad that I didn’t even stop playing at ten to twelve. I was like thirteen, just because it was fun, and it was something to do. I sort of slowly changed. Like obviously there was like the more heavy pretend stuff you do when you’re younger and then I kind of got lost into the Sims. I was very, very into the Sims at one… I mean I was like addicted to it. And then it grew into video games, the more fantasy style ones, like RPG type games. So like, Final Fantasy and Kingdom Hearts and things like that. And it was when I got into Kingdom Hearts that I sort of become more who I was, who I am now. Just because I could lose myself into this world, and through this world and these characters I created I sort of built myself up and then I made friends through that and it sort of developed from that.
 
You mean real friends?
 
Real friends. Yes. I didn’t. I don’t believe... Like I never thought my imaginary friends were real, but I always knew they weren’t real, but I liked to pretend they were.
 

Jenni was bullied at school. She felt this was linked to her poor social skills that resulted from growing up with her brother.

Jenni was bullied at school. She felt this was linked to her poor social skills that resulted from growing up with her brother.

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Well as I said when I was younger, I obviously couldn’t have friends around and because I didn’t really have, because obviously I didn’t have my brother to grow up with, my social skills are terrible really [laughs]. You know, really bad when I was younger. And I was bullied a lot like all the way through school. And it still hasn’t really stopped but I just don’t care anymore. And it’s just sort of a knock on effect, that caused that and then this caused… and it just escalated. So yes, for all of my primary school I was bullied because I was, just like I was like that weird kid that no one really, like no one got to hang around with, so no one really got to know. Because I’m, also because like what was going on at home, I was always like slightly more emotional. So I mean, and I was, you know, how you get these kids that just cry over everything. I was one of those anyway so … And at about year two I started getting bullied, like it was just sort of like typical picking on just a random kid and then it just slowly progressed until it peaked in about... Actually no, it didn’t peak, it sort of went up, down a bit, and then up again. But in like year four it got really bad and it didn’t help that I got my hair cut like into, you know, a stupid bowl cut thing and I looked like mushroom [laughed]. Obviously that made, because my hair it was went [explosive sound] and I just got picked on for that, and like everything got like so much worse. And then it sort of went down again and then it picked up again. Then my hair started to frizz as well. It wasn’t just big it was frizzy as well, and I got called Hagrid. I still cannot tolerate that, I mean I still snap at people calling me that, because it had that much of an impact. And some of the stuff that happened to me in my primary school was horrible. Like they put daddy long legs in my lunch box. I don’t even understand that. I don’t even know how they caught them to be honest but, and the school didn’t really care.

Jenni explains that her experience with her brother has made her more understanding of both disabled and non-disabled people.

Jenni explains that her experience with her brother has made her more understanding of both disabled and non-disabled people.

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If my brother wasn’t autistic, I probably wouldn’t have been picked on as much to be honest because I would have had more time to interact with people and I probably wouldn’t have been such a bossy little cow and things like that. But… I wouldn’t really changed anything that happened, because if I changed it, then I wouldn’t be who I am now, and all things aside I’m quite happy with who I am now. So I mean once you get through all the shit, quite frankly that is growing up, once you actually get to grown up, I think you have…I mean I find that I have a much better understanding of like just people in general. I’m much more sympathetic and well I’m much more sympathetic to people who actually have problems and much less intolerant of people who are just like, I hate my life. Why? I’ve dyed my hair the wrong shade of black, type people. It’s just, they just get on my nerves. But … 

Jenni says that when she was a child, she was always aware that her brother could "attack".

Jenni says that when she was a child, she was always aware that her brother could "attack".

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And I’d always have to have a phone near me. So in case my brother kicked off I could call my dad straight away. So that kind of, you’ve got this phone sitting next to you as a constant reminder of what could happen. It’s a bit, it’s kind of difficult to get into like saying you’re playing Barbies, and you’re sort of like, my brother could attack at any moment. That’s a lovely thought. Obviously I couldn’t have friends over very often. And I couldn’t go out very often. Because it was like the norm, like your house, other friends house, your house, other friend’s house. So it would be like my house, my friend’s house, two months, my house. And obviously because I had to be in at certain times stuff like that.

Jenni says there's no point in worrying about it; "just cross that bridge if it comes to it".

Jenni says there's no point in worrying about it; "just cross that bridge if it comes to it".

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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.

Jenni found the prospect of becoming her brother's guardian "daunting".

Jenni found the prospect of becoming her brother's guardian "daunting".

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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.
 

Jenni doesn't think there is any point in worrying about having a child with autism; you don't know if you will and there's nothing you can do about it.

Jenni doesn't think there is any point in worrying about having a child with autism; you don't know if you will and there's nothing you can do about it.

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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.

Jenni felt that siblings were neglected when it came to support. At the support group she attended, nobody talked, they just played together.

Jenni felt that siblings were neglected when it came to support. At the support group she attended, nobody talked, they just played together.

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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.

Jenni thought that information should be age-appropriate.

Jenni thought that information should be age-appropriate.

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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. 
 

Jenni wants others to know that things do get better and they should find 'the thing that makes them feel more at home' during the difficult times.

Jenni wants others to know that things do get better and they should find 'the thing that makes them feel more at home' during the difficult times.

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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.
 

Jenni tried to read some of her parents' books when she was younger, but she couldn't understand a word of them.

Jenni tried to read some of her parents' books when she was younger, but she couldn't understand a word of them.

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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].

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