I think if we met… sort of like, find out what it’s like for other siblings maybe of autistic sort of children. I think it would be interesting to, yeah, definitely find out what it’s like for them, because there’s stuff on the internet, like symptoms of autism and like that sort of stuff, but there’s not much about actual real lives to do with what it’s like to live with autistic people and like, to have an autistic brother or sister.

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 likebecause 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].

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.

But I think I also did read The Curious Incident of the Dog in the Night Time. About that. That was one of the book I did read, I was able to read that book, and I can be like…obviously it was like… quite a few people. And I said, Yeah, I read that, my brother has autism Bringing it up. So sometimes it’s quite like a novelty to bring it up or something.

And how do people react when you bring it up?

There wasn’t like such a big reaction or anything. It was just like alright, okay. You know, they’re, they’re indifferent really so it’s not much. There wasn’t like, Oh my God! Or anything like that so

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.

My parents gave me books on it. I read them through, but I wouldn’t necessarily… I didn’t want to believe it, kind of. I didn’t want to believe that [brother’s name] had a problem, but when he was diagnosed I was only five, and I was just starting primary school, and you know, that’s when you build up friends for life, and you go out on, you know, sleepovers and stuff. But I didn’t really have that. I had no information really, apart from the books that my parents gave me, I think. it’s too in depth for a five year old to take all that on board and… But I picked it up pretty quickly just through watching [brother’s name], and being indoors all the time, and watching what he’s like. And his behaviour patterns and stuff.

So he has sort of educated you about it?

Yeah. You, you know, people can write books and books on Asperger’s Syndrome, but you have to live with it to understand it, and to, I don’t know, to really grasp it. You can study it for years and years, but unless you live with it, you won’t know half of it so

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 traine. 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.

I don’t really think about it anymore. When I was younger my mum used to have stacks of information. I know enough to get me by, kind of thing. I even feel now that I don’t really need to know anything more because Richard’s Richard now. it’s not that somehe’s growing up and he’s obviously changing and maturing, but even if he stayed at his level now it wouldn’t be an issue for the rest of his life, so, I don’t feel like I need a anymore, but when I was younger, I found that useful and I did have information when I was younger.

Was that information geared at being a sibling or was that just general information?

No it was just general information. There wasn’t anything geared at being a sibling.

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.

So you think your brother kind of led you to doing the work you do now?

Yes, oh yeah, definitely.

Have you tried to find out information about Asperger’s throughout or life, or when was the first time that you really started to look for it?

I first sort of read about it and looked into it as I was starting this job.

When was that?

Sort of been about two years ago. Because each case is different. So I thought I’d get a wider sort of knowledge of it.

But you didn’t feel at any point when you were younger that you needed to know about what Asperger’s was? No?

No. I just needed to know about [brother’s name], you know, I was living with [brother’s name], and I needed to know what was, what was what was best for him, you know.

And do you think that you would have liked to have information when you were growing up about what Asperger’s was?

I think it would have helped, yeah. There’s a lot of things that he did, I wouldn’t know why he was doing it. I think if the information was here, I would have said, Oh right, okay, that’s why he’s doing it. This is his Asperger’s Syndrome

Do you think you would have liked to sort of get involved with a sibling support group when you were younger or not?

Well I didn’t really know about autism when I was younger. I only started hearing about it in my mid to late teens. So it would have been irrelevant and I probably wouldn’t have known what was going on.

Would it have helped or would it have made your life different if your mum had been diagnosed earlier do you think or not?

Probably not. I assume I would have been told in some way, but I wouldn’t have really known what it was and I’d just have been like, Okay. Oh, something shiny And then just gone about my stuff and again not really looked at anyone any differently.

I think it doesn’t matter what people tell me. It feels that I’m living with the person, so, if I was to read a book or go on the internet and they told me how I should be around, I don’t know what information I could gain that would help. They couldn’t tell me how to be with him or what could be helpful, because I’m the person, I’ve grown up with him. And he’s older than me, so he’s always been there. So there’s nothing new I could learn. And I suppose it’s something that’s different for everyone as well. So I’d been reading about something quite generalised instead of something specific to my brother, which couldn’t be helpful. It would just be teaching me about a problem that people have, when I’ve got a case study. So it’s unnecessary I think.

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.