Rachel (mother of 4 children, 3 with autism): I guess in the moment I’ll just go right, this is going on, we’ve got to work it out, very practical, which is... I’m a very emotional person so I was surprised that I kind of took on that ‘Right, this is the information we’ve got, we’ve got to work with this, let’s just get it done. Boom, boom, boom.’ And I just went very practically about it. Obviously I had my breakdowns every now and then [laughs], where I just would cry, but it just came into that fighting for your child mode – that you won’t let anything get in your way. You’re just like, ‘Right, we’ve got to work this out and someone’s got to help me do it.’
Alison (mother of 2 children, 1 with Asperger’s): There is that grieving process that we certainly go through. There’s a lot of frustration, umm, a great amount of anger. And that mother guilt too, I certainly felt that: ‘Oh, I must have done something wrong,’ or ‘I certainly could be doing this better.’ Aah, and that will continue, there’s no doubt about that. There’s good times too, there’s times when we just think ‘Wow, he’s just so gifted and smart and he’s going to do wonderful things, and we’re very blessed,’ but it is hard work.
Peter (father of 2 children, 1 with Asperger’s): There was a lot of anxiety, there was a lot of ‘What have we done wrong?’ sort of thing. And it was basically a really stressful time.
And there was a lot of stress placed on both myself and Alison. And we, you know, probably didn’t handle it as well as we could have, but, you know, we’ve come out the other side, which is really great.
Joanne (mother of 4 children, 2 with autism): OK, what do I do? I’ve got two children here. I’ve got two children who can’t talk, and they’re three. I rang a couple of people and said ‘What do I do?’ And I didn’t take it too hard. I just said ‘OK, what can I do for these children?’ I’m not going to put myself in a corner and cry. This is not going to get them anywhere.
Bobby (father of 2 children, 1 with autism): I was in denial, initially. I would say within the first fifteen months of his development, I was in denial. Umm, however, it’s in the best interests of Peter that we did seek further advice.
Shannon (father of 4 children, 3 with autism): I’m a disability carer, so I sort of work with behaviours, umm, quite severe behaviours in adults. Like, working in it for so long and then sort of seeing it in your own child, you sort of obviously go into denial. And you’re so scared because you see what happens at work, and what has happened when things aren’t done right as a child. So you’re scared, when you come home, are you doing the right thing? You know, you don’t want to do the wrong thing. You’ve got to push it to the back and sort of think about Dominic, and think ‘What can we do to help him as much as possible?’ But I mean still, now, I mean it does get harder. Especially because he’s arm-flapping a lot at the moment. It’s really hard to see him do that. Especially in public. I think because you want to protect him all the time.
Marita (mother of 2 children with autism): When we got diagnosed, it was actually a relief, because I just went ‘Oh, this explains a lot of the problems we’re having,’ and we started speech therapy and they used the PECs – picture communication symbols – and we were able to communicate with Heidi that ‘You bring me a picture of milk, and that means I’ll give you a drink of milk.’ And gradually through that she was able to build up language and communicate again, which reduced so much frustration.
Sharon (mother of 2 children, 1 with autism): We sort of all came to the realisation that autism spectrum was going to be part of our lives and we needed to embrace it, and get on with it, really. And it was important that Peter felt that he had a supported environment and that we could put strategies in place to overcome his challenges. But just as much as they have challenges, we needed to leverage off the strengths that he had, and that was really important, to look at the strengths first.
Bobby: To help each other out, we’ve managed to work together on every case Peter needs assistance in. For example, speech therapy, we will take turns. Or we’ll go together and we’ll actually participate together. We work together as a team. Yeah, we can’t do it without each other.
Sharon: We jumped on board and we sort of said, right, we’re going to not only understand it for ourselves but we’re going to make available information to our families, and to our friends. So they understood not only what we were dealing with, but it’s more about what Peter’s dealing with because he has to live with it every day.
Peter: Two things about it I’ve really learnt is – the two main things I’ve learnt – is 1: there’s a hell of a lot out there. Once you know what you’re looking for and once you understand a bit more about it and enter that world...
Alison: I’ve read a great deal just to understand how the Aspies really think. Umm, I’ve spent many hours in the psychologist’s room, just talking to them – for myself as well as Ellis. And that’s really necessary that you have someone that you can debrief with.
Jane (mother of 2 children, 1 with Asperger’s): When we were in England, umm, I did a course, and it was with his teacher’s aide. And it was all about what autism is and the strategies you can use at home and at school. And it was amazing because people would talk about their story, and the woman beside me described this child, and Julian’s teaching aide and I just looked at each other and just went: ‘She could be describing Julian.’ Like, if somebody had said that, I would have thought ‘That’s my child they’re talking about.’ So it was great to be able to hear other people’s stories and umm, yeah, just share experiences and understanding.
Alison: I’m a phone volunteer for the Asperger’s Syndrome Support Network. And there is a great demand out there now, people wanting more information. Especially for adults who were just being diagnosed or starting to question what challenges they’ve had in their lives, looking for answers.
Marita: Through our early intervention centre, we got in contact with a young lady who’s got Asperger’s as well – she’s a wonderful person. And she comes and she sees Annie once a week. And they play together. And Annie can talk to her about anything. And that’s just – I’m getting teary – that’s amazing though, to be able to have someone who understands where Annie’s at, and they can talk together. And to see an adult with Asperger’s, she’s living, you know, almost a typical adult life and she’s just gotten married and she’s such a beautiful person, and, yeah, I’m really blessed Annie’s got someone like that in her life.