It was, it was a mixture. I mean obviously every big sister finds their little brother annoying, but there were times when I just didn’t understand why he wouldn’t put the yellow tee-shirt on or wouldn’t, wouldn’t…You were trying to get him to just do something and he wouldn’t do it, and he didn’t know what and he was getting very upset over something that was very tiny and that he…There didn’t seem to be any explanation about why he would get so upset when the Hoover was turned on, or it was just didn’t know…or why, there were certain smells that he just, or why he would suddenly appear very rude or…which again caused problems at school and not so much nursery people when people of 3 or 4 it doesn’t matter so much. But at school he didn’t, the teachers would call each other by their first names, but the students were meant to call them Mrs or Mr and he just didn’t I mean I don’t think it’s that surprising that a 5, 6 year old doesn’t pick up on that, but everyone else did and he didn’t, and so he just, he couldn’t, he just, yes, there were just things that he didn’t understand why… why can’t you see that? As an older sister it was just like, just be quiet and get on with it’ kind of.

So when you were growing up before the diagnosis, did he make you feel embarrassed? How did you feel about him?

Generally he was just my little brother, but I didn’t, especially as I got to about, I don’t know, 12 or so, 12, 13, and he would have been 6 or so then. And he would, if my friends came over, he didn’t know that he shouldn’t necessarily hug them and like and there were things like, he would, he didn’t think, yes, he’s not, he will happily hug people and stuff like that, which isn’t. He doesn’t have a problem with that, but equally he doesn’t necessarily know who he should and shouldn’t. Well he does more now, but when he was, when he was younger he didn’t and he would hug and kiss people he’d not met before. That was embarrassing. And going into shops and he’d managed to pick up the most embarrassing item he could. Not that was doing it deliberately, but like if there were things that he could pick up, picking up like women’s underwear probably wasn’t[laughs]. But things like that, but, I mean he was, we still played and stuff like that. I think when I was, when he was a 2, 3 year old what I found most annoying was that there were things that me and my brother had had for years. We’d never broken them when we were younger and he got, he used to get very angry, and very frustrated, more than just toddler tantrum type things, and would break things that we’d had for years and years. So that was quiteI used to get really annoyed about that.

What sort of things. I mean did you get upset, things that you know were attachedthings like teddies or

Yes, it was, I wasn’t, yes things like teddies or story books that we’d all had and he’d managed to destroy in two minutes only. But it was, I think a lot of that we saw as just the fact that he maybe had a different temperament to us or he was the youngest. But at the same time… well, that’s how my mum would, my mum would just say, Oh he’s only little Or something like that. Not all the time, butBut I saw it as I was younger than him and I didn’t break it kind of thing, but

For some things. He’ll… it depends, it does depend quite a lot on whether or not he’s, say I’ve come in, I’ve come in from school and he’s been at home longer, and if he’s had a good day he’s more likely to come up to me and say, How was your day Because he’s knows that’s a kind of what you do, but if he’s had a bad day, he doesn’t remember kind of, he’s got quite, I don’t know he’s not always like this, because he does talk about quite random things, like he’ll suddenly ask you about factual things, completely out of the blue. it’s not been on the telly, it’s not been on the radio. You don’t know where it’s come from, but he does have quite a lot of structures that he sticks to, like you come in from college and he’ll ask you how your day was, if he’s, if he’s had a good day, if he’s not, if he remembers and he has the structure of how are you?. I’m good. How are you?’ He has, he, I mean obviously everyone has, has structures like that, but he seems to stick to it, and if I was to say to him, No I’ve had a really bad da and get upset, he wouldn’t, I don’t think he would know how to deal with that, because that’s not the pattern for that conversation.

I don’t think, but at the same time I do worry that school will go badly, he won’t, he won’t go to university, which he talks about wanting to do all the time. And I might have my brother living with me when I have my own family, because it, or living, I feel like there is the possibility that he could be quite reliant on, on other people as an adult, but I don’t think that there’s any reason he should be if society adapts to him, because I don’t know if that’s a bit of a, I don’t know. But like he is perfectly capable of doing things and like cooking and cleaning and all that kind of stuff and intellectually very capable. But that doesn’t mean that if things go wrong he’ll necessarily be able to cope. And I suppose I hope that he will be able to and he’ll go and do everything that he should do, and everything, but at the same time I do, I do think about the future where he isn’t independent or something.

Yes, meal times are quite difficult, he has a very, similar to the, the sensory kind of, doesn’t like loud noises, his range of foods that he’ll eat is very small that can be quite frustrating for whoever’s cooked. Because even though if my mum’s cooked or dad’s cooked and he doesn’t eat it, I can kind of see why. I can be like oh he doesn’t like that, that’s why But if I’ve cooked and then he doesn’t eat it, I feel just as kind of rejected as they do. That can cause quite a lot of, it probably does cause the most arguments, because then they’ll, we try and then consult him about what’s going to be had for dinner so that he will actually eat because he doesn’t eat enough. So and then he won’t know and then it all gets quite fraught [laughs]. But, so that’s quite, yes, meal times are probably the most, we don’t really argue as a family, but mealtimes will probably cause an argument. But he does like cooking and he makes very good bread. So maybe he’ll start cooking and experimenting with food and thus eat more things.

So when you’ve got new friends in the sixth form at your new school and you bring them home, do you explain that there’s anything wrong with [brother’s name]?

No.

You don’t do anything to prepare people?

No. I mean, now chances are he’ll be sitting reading or on the computer or doing something. He won’t really, he might say hello, but he won’t, he won’t really… I mean my best friend knows that he has, he’s on the autistic spectrum, but that’s just through conversation and also through knowing him for quite a few years now, rather than just coming round a few times or something. But in terms of someone new coming round I don’t really, I don’t say anything. it’s not obvious. And it’s not there’s nothing that they couldn’t do around him, that they would do to someone they hadn’t met before orI justit wouldn’t, yeah [laughs].

…But he does, yes, he comes up, I mean he, he comes up and hugs me and stuff like that, which isn’t something he does with that many people. And even generally in people with autism isn’t necessarily that common. So I feel quitewhen he does things like that you feel quite, like honoured almost. But, so there are kind of, definitely, there aren’t necessarily… I don’t know that there are positives to autism except for I think possibly intellectual ability in his case, but it does mean that you probably appreciate things that, when he does, if he has a good day, like he came out of school a while ago and said that he was happy, and that was like ultimate, amazing my it was just such a shock after a year of really, really bad schooling, not schooling, but like getting him to go to school being really bad. And just a complete battle all the time. For him to come out and say that he was, he was happy was just amazing. He went back the next day and had a terrible day at school, but it was still a day that he said that he was really happy and that was, that was really amazing kind of, so
Made you feel happy?

Yes. Yes.

I don’t think that I have the same relationship with my parents had I not had problems, and had [brother’s name] not had problems. I think, the times when I probably would have gone shopping with my mum or, or something, just things like that, or kind of those times didn’t happen as much as they would have done, if, had everything, if things had been different. But I don’t, I’m not as, I think I probably see my parents differently to how other people seem to think that their parents can do everything. Like I have friends who think that their parents have the answer to everything. But I don’t know if that’s normal at 18, but I definitely I don’t know. I think I’ve probably had more of a kind of adult to adult relationship with my parents, even when I was a child. Like12, or 13 or something, rather than kind of getting to18 and suddenly realising that my parents are people or something [laughs].

Oh teachers, I think there have been improvements because now social educational needs coordinators have to have proper training. But that means that there are ones employed currently that don’t have the correct training. And I think that there needs to be a lot more awareness of, just like there has been with dyslexia. There’s now far more acceptance and awareness of dyslexia in, in mainstream classrooms. But there isn’t with Asperger’s and autism. And that it’s not just one area and that definitely each, each person on the spectrum is different and has different needs. I think probably, the biggest problem, and the biggest problem for [brother’s name] is, has been school, rather than, I think, medically he’s been supported really well. As a family I think, I think things could have gone a bit faster in the beginning when my parents were first, really kind of, there’s something definitely wrong here. It took a long time. I think now we’re getting the right support he sees people, my parents see like kind of parental guidance but based around the fact that [brother’s name] has autism.

So that’s good, but when he was first, when we were first thinking, and they were first definitely thinking that there was something that needed, there was something wrong more than just being a bit different, that was quite, it took a long time. He was on a waiting list for a long time and then he saw various, and my parents saw various different teams of people because there wasn’t one big team. It was, he saw a speech and language team, and then he saw the more kind of central mental health team, and I don’t know that that, that my parents really minded that, but it did feel a bit. It wasn’t a panic because it was over such a long period of time, but it was a bit, there was a period of definitely kind of confusion about, and also what to tell [brother’s name], because he was seeing people about speech and language and he was seeing people about autism and I think because there wasn’t, there has been continuity since then. But to start with there wasn’t at all. I think that would have been better. Especially if you think someone might be autistic. But definitely now they’re doing, it’s really good, but school could definitely be better. I think that there should be much more compulsory training for schools about Asperger’s rather than optional because there are optional things and his school has not opted to do them so