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Marti: Interview 09

Age at interview: 20
Brief Outline: Marti's younger brother was diagnosed with autism when he was about 3 years old. He is now 18.
Background: Marti lives with her mum and brother. She works at two different shops. Ethnicity/nationality: White British.

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Marti’s brother, who is two years younger than her, has severe autism with challenging behaviour. He has limited speech and limited social skills. He is still at school but now he has turned 18, Marti and her mum are trying to find some provision for him, particularly because they both work. Growing up with her brother was challenging for Marti at times and she describes being slapped, having her hair pulled and feeling very embarrassed going out shopping with him. Her brother could get frustrated and angry at times and this led to destructive behaviour such as smashing the television or throwing games consoles down the stairs. 
 
Now he is older, Marti feels her brother respects her more. She gets him ready for his taxi to school each Monday and finds that “he is as good as gold now” to look after. He has a lot of rituals that can be disruptive for the family, for example, they can only drive particular routes otherwise he can become aggressive. These rituals change over time as he drops some but then adopts different ones. 
 
Marti and her brother attend a support group so spend some time together there, but overall, she says that “he just wants to be left alone”. Marti doesn’t want to have children herself because she wouldn’t want to “bring another life that would have problems”.
 
 

Marti explains that changing the route they take in the car can result in upsetting her brother.

Marti explains that changing the route they take in the car can result in upsetting her brother.

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Very ritualistic. Comes downstairs. Disney channel. We have to drive certain ways in the car, or he’ll get upset and pull our hair, which is very nasty. And he’s not grown out of that one yet. When we were little he would slap but with age his grown out of that one. He does grow out of a lot of rituals, but it’s just when [laughs]. And unfortunately some of the bad ones still remain. But he gets better. And another one is turning up the telly really loud in the morning which hasn’t been a nice one, but he’s coming out of that. So rituals aren’t forever, at least some of them.
 
And do you do anything to help him get out of these rituals?
 
There’s not really anything we can do, because if you try driving that certain way in the car, he might not do the ritual then, but it would build up inside of him, and when we get out the car, he might pull hair. So we don’t really want to get our hair pulled. So we can’t really help him get out of that one. It’s just driving that way once every five months to see if he’s forgotten about it. We tell him off for turning the TV, turning up the TV, he’s got a reaction. He laughs at the reaction. It spurs him on to keep doing it, because he’s got a reaction. There’s not really a lot we can help him, because when you’re so set in your ways with a ritual you can’t really get out of it or help him. Just wait till it goes away.
 
 

Marti had to move to a new area and attend a new school in order to accommodate her brother’s...

Marti had to move to a new area and attend a new school in order to accommodate her brother’s...

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We had to move where we are now when I was about eleven. And because he had to go to a school for people with disabilities because we were quite far out he would have had to have a got a taxi quite early in the morning to get here every day. So we had to move when I was quite young. Luckily it was at the transition point where I would be going to secondary school. So it fitted in quite well. So we had to leave where we lived to come here, because of the autism.
 
And how did you feel about that at the time?
 
I wasn’t really bothered. I didn’t like the school I was at. So a new school was quite appealing. It was quite a small town with nothing going on. Now we’re in a much bigger town, and we didn’t, other than a few members of family we didn’t have anything left in that town. It wasn’t a terrible change, it was for the best. It was better schools for myself here as well.
 
And did you have to leave all your friends?
 
Well my best friend had already moved away, so I didn’t feel like I was leaving friends behind, that was never an issue either.
 
 

Marti’s brother smashed their television and they can’t leave any bottles of liquid in the bathroom.

Marti’s brother smashed their television and they can’t leave any bottles of liquid in the bathroom.

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Well we’ve had to put a screen on the television because he has smashed television, the plasma inside and we think, he didn’t tell us this, but what we gather is he smashed the remote on the screen and broke the telly, so now we have film cover plastic over the telly to try and stop that happening again. We have, we can’t have bottles or stuff with liquid in like toothpaste or the hand gel in the bathroom because he will tip it away. He sees something so he will tip it or spill it. He does put water down the sink now, but he it used to be just spill it. If there’s a glass of water, just knock it over, spill it, get a reaction. He gets a thrill out of that; hiding things that we don’t want broken. I’ve lived all my live hiding like my games consuls, my gameboy. He had his own Gameboy. We had to take it away, because he would get angry with it and throw it down the stairs and that’s led to a few near misses. If you don’t know he’s about to throw it down the stairs and you’re walking past the stairs, you had a risk of being hit by a flying Gameboy. So we’ve had to hide a lot of things that we don’t want broken. 

 

Marti explained her brother’s autism to friends who were coming to visit her at home.

Marti explained her brother’s autism to friends who were coming to visit her at home.

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And did you talk to your friends about him much when you were younger?
 
Not really. I didn’t think it was ever that big an issue. If I had friends over from school I would explain that yeah, that’s my brother, he will just do his own thing. He won’t talk back because he’s autistic. But I never had, I was never bullied or anything for it. It was, not really a big deal. I guess I was quite fortunate that people around me were so understanding.
 
Okay and why did you feel you had to tell them about it whenever they would come over?
 
Just if I was being picked up from somewhere and my brother was there with his thumb in his mouth and or if he would kick off in a supermarket, or if he would start screaming or getting upset for no reason, I would just let them know that he doesn’t understand things.
 
 

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

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

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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.
 
 

Marti felt that that information could not teach her about her brother.

Marti felt that that information could not teach her about her brother.

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I remember getting a book when I was really little called ‘My Brother has Autism’. I should think it was sent to us by the National Autistic Society or something. It didn’t really explain what autism was because it was for young children. And no I didn’t really have much information. But you know, mum works, worked in like a play school for disabled children. So mum was also very aware and had knowledge of the subject. But to me it’s just always been there, and I’ve not so much read up on it or anything, I’ve learnt from experience as he’s grown up. I never had any information when I was little. All I knew when I was little was that he was special. That’s pretty much it.
 
And do you think you would have wanted any particular type of information?
 
When you’re so young, I don’t suppose it really matters. You just need to understand that they’re different, and won’t answer you back if you ask them a question. I don’t think I really needed any information. I just learned from experience because at the end of the day, every autistic person’s different. What applies to my brother might not apply to someone else’s brother or sister.
 
A few people have said that to me that they’ve preferred just to learn from their sibling what they want. And now do you think you would like any more information?
 
Not really. I think I know my brother pretty well, and the information wouldn’t know my brother pretty well. Because the information that would be given would miss out all the little bits, the information can’t tell you what your brother or sister’s rituals are. It’s very individual. There can be some generalisations, but only you and your parents know your brother, sister, child, more than any information that can be given.
 
 

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

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

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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.
 
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