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Ellie: Interview 06

Age at interview: 17
Brief Outline: Ellie's brother is thirteen. He was diagnosed with autism when he was two years old.
Background: Ellie lives at home with her mum. She is a full-time student. Ethnicity/nationality: White British.

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Ellie lives at home with her mum. She has one brother who was diagnosed with autism when she was six. He has been living in a care home for the last two years since his behaviour became too difficult for her and her mum to cope with. According to Ellie, life was very stressful prior to him leaving. She said that there had been times when he “got really angry”, “lashed out” and bit her. 
 
Ellie found it difficult when he left their home because although she didn’t want him to go she also found him difficult to live with. The stress of him leaving home caused Ellie to have IBS with related ulcers and a hernia. She feels sad that he has to live away from home, but thinks it is better in a way because it has eased the burden on her and her parents and also because he has the opportunity to “improve all the time”.
 
Ellie attended a support group for about six months, but it had to stop because nobody wanted to run it. She would like to see how others have dealt with having a sibling with autism so that she could compare herself with them and see that she “might not have been that bad at it”. Ellie summarised her experience by saying that “it’s like having any other sort of sibling, it’s just a bit more work”. She described him as “wonderful” and that she wouldn’t ever change him except to “get him a little better”.
 
 

Ellie did not enjoy going out with her brother when she was younger because she “didn’t want to...

Ellie did not enjoy going out with her brother when she was younger because she “didn’t want to...

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What do you think other people think about him then?
 
It depends what he’s doing. I remember, we were in a shop once and there was an elderly couple. They don’t know everything about it, but someone said that he just seemed like he had half a brain. And it was quite insulting because he was only about six and I was about ten and you just you don’t say that about people anyway, but then the person behind the shop like told them he’s autistic, and I don’t even know him. And it was nice to know that some people do know. But I don’t really know what people think of him, but he used to like fall on the floor and start kicking off and people just walk over him. And I guess that was why I didn’t really want to go out, because I just didn’t want to see people’s reactions. So I think people kind of think he’s really different and like odd, and they don’t really think that it’s disability. They just think he’s like either playing up or being strange I guess.
 
And how do you feel about all of that?
 
Oh well that’s why I was rather protective. It really upsets me, and it gets me angry that anyone would say that about anyone really. I don’t think it’s right just to say anything about anyone like that. But I suppose it’s harder with autistic children because they don’t look any different. They look normal then they can be walking along and all of sudden twirl around like a princess It’s, if he’s a boy at like five foot something, it’s kind of strange. It’s funny to me, because I know that he’s doing it because he’s being him. But no one else will know and they might think he’s a bit strange but I guess that’s what I was worried about. But then I learnt that if people are going to see him like that then they’re not really worth thinking about at all.
 
 

Ellie found home life very difficult when a lot of carers came to the house and “it was just...

Ellie found home life very difficult when a lot of carers came to the house and “it was just...

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And it was really hard having people in the house looking after him. Because they used to come in and care for him. And that was just hard. Because it just breaks the privacy thing, because those people were here and it felt different when they didn’t look after him properly. They wouldn’t wash his face properly. It’s just the little things that really got to me.
 
And when did they start coming in to look after him?
 
It must have been about nine years ago I think. When we lived here for a year and he must have been about four. And we just needed people in the mornings to get him dressed or some people in the after, evening to look after him if my mum went out, it was just constant. It was at least four times a week and then just, it was really annoying at times, just people coming in and talking to you when you want to do homework.
 
Oh I can imagine. It just felt like your space was being invaded?
 
Yes. Because, although they were lovely people, I didn’t want them coming in my room to talk to me if they were bored. Because he’s really independent, he watches DVDs and that’s him, he doesn’t need social interaction [small laugh]. 
 
 

Ellie found that others were accepting of her brother's autism if she was.

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Ellie found that others were accepting of her brother's autism if she was.

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Like before I guess I wasn’t because it felt like I was holding so many secrets just, it’s like a different life. But now it’s more mingling together, and I don’t mind telling people, because everyone’s a bit older, and they all understand a bit more, and it’s not so hard. It’s better.
 
Okay and did you go to college with the same people that you were at school with?
 
Mostly. But I found that I made a lot of different friends and it was just easier at first not to mention anything, because they didn’t mention anything. But as you became better friends and you sort of learnt things, just be like, just quickly mention that he’s in a care home, and then just quickly by pass it all. But they’re all a bit more grown up. So more people just accept it really. If you’re more accepting about it, then people will be as well. But when you’re trying to keep it a secret, people pick up on that.
 
 

Ellie talks about how by growing up with her brother she has become able to see the positive side...

Ellie talks about how by growing up with her brother she has become able to see the positive side...

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And how do you think that having a brother like him has affected your whole family?
 
It sort of makes it really difficult to stay together, and I think it sort of breaks it apart a bit, but when it first happened people get angry with the other one, and start blaming each other. Then everyone gets a bit stronger about it, and like they realise that he’s still your son or your brother or your grandson and he’s just a bit different and then everyone accepts it more and then everyone can treat him properly and nicely and everyone’s a bit more open to other things as well, like if you see any sort of disabled person, you just, see a different person. If someone, who doesn’t really know much about disabilities, is walking down the street and they see someone in a wheelchair. They might just look a bit, but I would say no one in my family would ever give a second look to them because it’s more accepted within us. We’re more open with people and we don’t ever say anything different about other people. We know what it’s like to be said about, and we’re just a bit more understanding about things. So it’s changed us in the way that we are towards people and the way that we would treat others. It’s helped us to love people, whoever they are. And just enjoy the benefits of them, rather than think about the negatives all the time.
 
 

Ellie thinks that 80% of her mum’s attention was focused on her brother and 20% on the rest of...

Ellie thinks that 80% of her mum’s attention was focused on her brother and 20% on the rest of...

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I think she’s been majorly affected, because she is physically disabled. She found it really difficult to actually look after him, because he’s really strong and really big, and I’m nearly five foot one and he’s like five foot five now, at thirteen, it’s ridiculously big and when he was younger, he used to kick off and like she couldn’t hold him. But I think that hurt her more because her son was also disabled and I wasn’t a very easy going child myself. She just, I think she had one of the hardest times, because she had to fight for everything for him just to get help and everything. So I think it’s affected her majorly.
 
And do you think he took up a lot of her time? Did she have to devote a lot of time to all of this?
 
Yeah, I’d say, she still does now. She’s always filling out forms and working out things for down in his care home, and I think it was mostly 80% of her time was focused on him and things with him and 20% was like focussed on like the house and me and her and just rarely anyone else got a different thing with him.
 
 

Ellie talks about how the stress she experienced resulted in her becoming ill.

Ellie talks about how the stress she experienced resulted in her becoming ill.

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I was really stressed and I got really ill through the amount of stress, and it was just a really hard depressing time.
 
And would you be okay to tell me a wee bit more about that?
 
Yeah. Just like in the end I got a lot of excess acid from the stress, and developed IBS. So I stopped going to school, because I was in too much pain and in hospital a lot of the time. But I still managed to get GCSEs and then it started getting better after a while. I got quite depressed with him going away and it was like I didn’t want him to go so I was upset, but I didn’t want him home, because it was too hard. And it was just a mix match of emotions really. 
 
It must have been so hard.
 
It’s alright now, but, yeah, in the first year of college I had to drop out because I was still really stressed, and still ill, but I’m better now. 
 
 

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...

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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.
 
 

Ellie found the support group she attended helpful because she got to spend time with others who...

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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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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.
 
 

Ellie found information reassuring but “it didn’t feel right” looking for information with her...

Ellie found information reassuring but “it didn’t feel right” looking for information with her...

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Have you tried to find information about autism?
 
No. I’ve only ever really known anything from him and just my mum really. When you have him there, you don’t really want to look it up I suppose, because it’s just in the next room. It sounds really awful to say that you want to look up autism, but it’s because that is him. I don’t really feel right, looking up something about him. I can’t change it. So there’s no point even bothering about what it really is. So I have no idea what it really is.
 
Do you think that you made a choice to learn from him, to learn about him, rather than to learn about your autistic brother?
 
Yeah. I definitely feel that I’ve learnt from him, what autism is, not what autism is and then comparing it to him because every one of them is different and they do have different things. They’re all different, you know, and I’ve seen a lot of different autistic children and they’re all different and they’ve all got their own personalities. You can’t compare them, so there’s no point, for me anyway to look it up I guess.
 
 

Ellie can remember hating her brother at times, “not because he’s autistic, but because he wasn’t...

Ellie can remember hating her brother at times, “not because he’s autistic, but because he wasn’t...

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I guess there’s always been times where I’ve, it sounds horrible but I have hated him. Not because he’s autistic, but because he wasn’t normal. I have rarely ever thought that, but it was when there was a lot of people in our house. I just regretted that he was like it. Then I’ve got more used to it, and just more accepting that he’s not going to change very much, but the more he learns, the more he’s going to be able to do different things, and the more he enjoys, like he never used to be able to go to the cinema, because he used to get scared of the dark. Now he absolutely loves it, and it’s really nice just to take him to that. But there’s times when he has got really angry, and he has lashed out bitten me before, and I had to go hospital because he broke my skin and there’s like, there’s lots of different things that have made me, just want him to be a bit different, but I’ve never stopped ever like loving him as like my brother.

 

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”.

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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].

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