Steph: Interview 05

Because, because of the level that [brother] is at. He’s not he’s not high enough level to be able to kind of rationalise, well alright I’m going to so-and-so’s house. Mum says I’ll be okay, Steph says I’ll be okay. I know what I’m going to do. But he’s far too high a level to kind of think, to kind of not be aware of where he’s going. He knows exactly where he’s going, exactly what he’s doing. And his anxiety will raise as soon as it’s something different and because myself and my family want him to be calm and settled and happy, we have to work around that all the time, because it’s unfair not to, because if not that’s when he becomes distressed and I don’t think that me, mum, Dad could live with him being distressed because of something that we wanted to do.

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.” 

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.

I can remember one of my friends at school, because I’d started to be kind of to be open and honest about, you know, James has been given a diagnosis of a learning disability, of autism, and you know, saying to my friends, “Oh James has got a disability. James has got autism.” And one of the girls saying, “Well he’s not properly disabled.” And I can remember kind of coming back and saying, “Well what do you mean?” And she said, “Well he’s not in a wheelchair.” I said, “But children with autism don’t even sometimes talk and sometimes don’t even get toilet trained”. And I can remember kind of trying to change people’s opinion about autism then, so I must have known some things. I must have been learning some things. I don’t know whether that’s just what Mum and Dad were telling me or just kind of what I was absorbing as well.

It’s not bad, it’s just different. It just takes a little bit more thinking about and preparing to do things than I think it would normally. I’m not going to say it’s incredibly rewarding, because I’m sure it’s rewarding for other people that have siblings too. My relationship with my brother’s rewarding, but I think that’s because it’s my relationship with my brother, it’s not a relationship with my autistic brother, but yes it’s just different. It takes a little bit more time. It takes a little bit more planning. And it’s certainly not positive or negative; it’s just a thing that happens.

Yeah, we’re really close. We tend to go out together on a Saturday. So after this interview we’re going out to [city name] for the day, and we, I think we have quite a normal brother-sister relationship, even though James does have quite profound autism and does have a language disorder as well. You know, we do things like go shopping together, we choose his clothes sometimes. We go out for a takeaway; we go to a restaurant and that kind of thing. We can’t do the things that he doesn’t like to do because of his autism, but yeah, we have a fairly normal, I would say, brother-sister relationship. 

So I can just remember forming opinions. I can’t remember where they came from. I’m sure they’ve grown up and changed all the time, of course they will have. But I mean general opinions about autism have grown up and changed in the last twelve years anyway.