Sam: Okay so we are going to be chatting about Jigsaw. Which you saw last night. So, I guess, first question is, what did you think of the show.
Graham: Well, first off the show was terrific. Looked at as a whole theatrical endeavour, it was really good. Excellent.
Sam: I also thought it was really emotional, and very nicely done. It had a very lovely atmosphere to it, like the music and stuff was cool. I thought [that] the kind of purpose of the music in that moment was to be the voice of Max and Josh, you know the autistic brothers, and that was quite a nice way of including them, even though it is complicated for them to have a voice in this kind of show.
BEING A CARER TO SOMEONE WITH AUTISM
Sam: So I was just interested in like what you recognise from your experience of looking after me. And also the differences as well because this is a completely different kind of autism to the autism I have.
Graham: I mean, obviously Josh and Max have more severe autism, but it didn't really matter, as far as that was concerned. When you are somebody whose dealt with autism like I have as a parent – it isn't going to be the same as you, but you will notice little bits. I feel sympathy and empathy for Molly's parents – and parents of Max and Josh - because I too have been there. They've got it more seriously, and also they have the problem of it being long term. I mean yours is sort of longish term but not in the same way.
Sam: When you say not in the same way…
Graham: Well, you’re verbal. I mean, you weren't verbal to begin with, but you’re verbal now. You were violent when you were younger, on occasion, but you're not now.
Sam: Yeah, it changes.
Graham: It's changed, but I've always been conscious of that. When we did the early bird training, there were other parents who had more difficult children to deal with than we had with you.
Sam: I mean, that was something quite interesting. [With] autism, you’re not a particular level on the spectrum, it changes over your life, and it can become better and it can become worse. Nowadays my autism is not as apparent - although someone from the outside will probably notice some tendencies I have here in there. Where it comes out is in certain situations.
COMMUNICATION AS A THEME
Sam: And that brings me on to a point about one of the big themes of the show, [which] I feel is communication. You know, it comes up with the difficulty in communicating to Josh and Max about what is acceptable and what the rules of society are, and the difficulty of Josh and Max to communicate how they are feeling and how they feel about being put on certain medications, and even the difficulty of explaining to other people about the condition.
Graham: And that that incident in the car or in the taxi or the bus. I mean, it was, I thought she presented it very fairly because of course, the way it was put across to her mother, by the bus driver or the accompanying person was it wasn't much of an incident. And then it all blew up because the Surrey Council rang up. But of course, I thought she was quite understanding of the other side, saying sometimes it’s nobody’s fault.
Sam: Yes, sometimes no one's to blame, and that's really resonated with me as well.
Graham: I mean, on that particular incident: clearly, there was a little bit of a failure of communication about how seriously it was taken.
THE CATEGORISATION OF AUTISM
Graham: The difficulty is when these cute soft little children grow into adults. It's like that you get these big people unable to actually say [anything] – like an adult toddler.
Sam: I mean, I'm not sure how I feel about the term adult toddler, because it is accurate. But at the same time, it feels a bit jarring. It got me thinking, because I often define myself as high functioning autistic. But, you know, that term is sort of problematic because it implies the idea of a low functioning autistic. Science has divided people with autism into cognitive ability, but [it] isn't just about cognitive ability, it's also about social ability. And you can't just neatly put it into high functioning and low functioning.
Graham: But as the people who are involved in this, they've got to be able to sort people – it must make life a bit easier. You've got to get some sort of order into sorting people out.
THE SOCIAL MODEL OF DISABILITY
Sam: And the other thing she mentions is that often the reason these people are so vulnerable is because they do not conform to the same social norms that most people subconsciously figure out. It wasn't that they didn't know what was happening, it's just that they didn't see the point of it – their brains can't comprehend that. And their way of living seems fairly normal within their closed environment but when it kind of comes out into the everyday, those same things can [turn out] very badly.
Graham: And that is always a problem: how do you explain why your child is shouting or screaming or whatever? I mean, you know, we had a case when you were small in Poland and we were with Polish people and you had a meltdown because you wanted to drive in the front car. Well, we didn't know the way so they had to go in front to, to show us away and you screamed for an hour. It was difficult to explain to our Polish friends while he was screaming for an hour but you just have to accept it.
Sam: I remember that particular situation. You then drew me this story, about a battle, people going in the front. That was your way of explaining to me how the social rules work and you took the time to do that.
Graham: Well, that wasn't my idea. That was one of the suggestions that were made, that if you draw pictures for people with autism, you can understand [and] it makes life easier.
MOLLY TELLING THIS STORY
Graham: The thing is that this is an accurate play - no one can come and tell Molly she got it wrong, because this was Molly's experience and it's exactly as she knew. I remember once [what] one of your consultants [said] to me. I was asking him about what autistics generally do. And he said to me “The thing to remember, Mr Ross, is that we might be experts about autism in general, but that you are the expert on Sam.” And obviously, Molly is the expert on Max and Josh and no one else knows what it's like to be their sister.
Sam: I do agree that if we were comparing this show to a show written by neurotypical people with no experience of autism, I trust Molly more to tell a more accurate story. Having said that, there is questions to be asked about whose story is it to tell, who gets to tell the story of autism.