Marie (mother of 2 children, including 1 autistic child): I try not to think into the future. You know, what he’ll do when I’m not here any more, or his dad, you know – when me and his dad are not around. How will he live on his own? Because his room is chaotic. I mean really chaotic; it’s just everything everywhere; he won’t throw anything away. Things are broken and he’ll say ‘I want to keep them.’ So I’m thinking, umm, my thoughts are I just don’t want him to be a lonely adult. I hope that he’ll meet someone who’ll understand him and appreciate his good points. Because he is very kind.
Alison (mother of 2 children, 1 with Asperger’s): There are times when I get very worried and I lie awake at night thinking ‘Is he ever going to be able to leave home?’ Is he ever going to be able to be independent?’ In recent times I’m seeing there is a change. He is thinking a little bit more about problem-solving for himself, and options. And when he gets into situations where he has to make a decision, umm, because it hasn’t quite worked out the right way, he’s making better decisions. So, I think it’s all going to come. It’s all going to come. But it’s going to be a lot slower. And he’ll always need someone to be giving him good solid advice and that’s why it’s having a good network around him – people apart from us that he can trust and talk to, that really care about him.
Peter (father of 2 children, 1 with Asperger’s): We’ve tried to get him into the best school that we know about. We’ve got external support groups that we’ve put in place, and have joined. So the group that he goes to on a weekend – which is a bunch of other Asperger’s kids and their parents – that’s good from our point of view because, you know, the kids can go off and they can talk themselves and it’s a supportive environment and they are quite friendly to each other. And then the parents can talk about all the challenges they face, and different strategies they have, so it’s a good support group for the parents as well.
Alison: I think we try and do a lot of things, umm, in a practical sense. We don’t just talk about them. So, things that we take for granted – being able to, umm, get on the bus, know which bus to get, get on the train, buy a train ticket, managing money. Umm, we often use a lot of computer games, because he loves computer games, we’ll get computer games that are about that type of thing. You know, you’ve got your Sim Cities, and there’s a few others which are all about designing a city and… life, and all that type of thing. So in that virtual world he’s sort of practising a bit. And, yeah, just giving him lots of practical little experiences of things.
Marie: We’ve been advised by the multi-disciplinary team that are caring for him not to overload him. And just to kind of cope with challenges as they arrive, and if he asks, then we will. If we’re going somewhere we’ll say to him, we’ll try and explain the scene to him and we’ll say, you know, ‘this is how it’s going to be’ and ‘normally people do this, and they won’t do this’. So we’ll point out the unspoken rules that most of us understand. We don’t know how we do, but we do. So we don’t umm, you know, go into a person’s bedroom and start rifling through the drawers when we go to visit them and things like that. We just know it’s wrong. So we kind of just try and prepare him ahead for things that are coming. It didn’t work too well for high school. We tried to prepare him for that, and that was incredibly traumatic for him, you know, his first three months at high school. So you can try and prepare, but the experience that the individual meets up with, you know, you can’t cover every eventuality.
Peter: I can see that Ellis is going to have enormous problems just coping with some of the stuff that I can recall a long, long time ago in high school, that I had to go through, just as a normal kid. And that was tough enough as it is, without having the additional baggage to carry around of Asperger’s. But I think once he gets through that, and if he can get through that, then I know from the research done and what people have told me, and working with the group of people that I do, that the sort of attitudes that he’s got, and the work ethic and the interests that he’s got will probably stand him in good stead, professionally and throughout his adult life. So, I’m really quite optimistic about how he will go, eventually. It’s just going to be a hell of a road to get him there, that’s all.
Alison: He presents beautifully. And that’s going to be great, if he can find the right avenue and career. Maybe a politician, or a debater, or something like that, he would do very well.
Marie: Interestingly, all the occupations he’s mentioned are all caring ones, so you know, he’s talked about being a vet, a doctor… One of the things he’s said he would like to do – because one of my brothers is a computer programmer – he said ‘I’d quite like to do that, because I really like computers.’ And so that’s a bit of a deviation from the caring bit, but then I suppose he’s caring for people’s recreation. Umm, yeah that’s what he’s generally said. And he’s stuck with the vet and the doctor. I’d be interested to see how he copes with them. I would never ever say to him, about anything, ‘Do you think you can do that?’ you know? I’d always encourage him to follow his aspirations.