One word embodies the sole expectation so many people today have about autism. And the maths-savvy, socially incompetent geek who is Sheldon Cooper isn’t even on the autism spectrum – according to the writers of The Big Bang Theory.
Autism spectrum disorder (ASD) is the umbrella name assigned to a broad range of neurological conditions that used to be known as autism or Asperger’s. ASD was so misunderstood that the DSM-IV (the fourth edition of the Diagnostic and Statistical Manual of Mental Illness) labelled some aspects of autism as “Pervasive Development Disorder – Not Otherwise Specified”. This was only updated in 2013.
The autism spectrum, commonly known as just ‘the spectrum’, is a broad disorder. It covers difficulties with communication but can also lead to a dependence on routine and normality which leaves those on the spectrum sensitive to changes. Some people on the spectrum have heightened senses making loud noises, physical contact or strong smells too intense to handle.
The DSM-V says “symptoms of people with ASD will fall on a continuum, with some individuals showing mild symptoms and others having much more severe symptoms”.
Autism affects one in every two hundred Australians, with the Australian Bureau of Statistics estimating 115,400 Australians were on the spectrum in 2012. Some estimate one in a hundred Australians have autism.
Christian Tsoutsouvas is one of those Australians. Christian studies linguistics at Melbourne University, but is also a producer of ‘Great Minds Don’t Think Alike‘ on SYN Nation – a community radio network.
“People don’t expect me to be outgoing at all, or go up to large groups of people, or want to go to a gathering or willing to start conversations with strangers, which throws people if I’ve told them I’m autistic,” Tsoutsouvas says.
“They don’t expect me to be into the things I’m into, like linguistics or movies; they expect the maths, the science, the IT side. They have a very narrow mind about the spectrum.”
Great Minds Don’t Think Alike was started in 2014 to provide a platform for those on the spectrum to share their stories and let the world understand them. While the show now covers neurological conditions like Tourette’s syndrome and epilepsy, the focus is still on sharing their stories and opening the minds of others to what life is like on the spectrum.
Someone who is also trying to open minds to the Spectrum is Tom Middleditch. A theatre student at Monash University, he co-wrote and directed ‘Them Aspies’, a show about the spectrum, with fellow student Jess Gonsalvez.
“We wanted to create an autistic world rather than put autistic people on stage doing autistic things. That would have been as contrived as possible,” he says of the show. The show itself focuses on thrusting the viewer into the world of an ‘Aspie’; a colloquial term for someone on the spectrum.
“We wanted to say ‘Welcome to our world, isn’t it unusual, isn’t it different, isn’t it uncomfortable? Oh, by the way, this is your world… by the way; you’re more like us than you think’,” Middleditch says.
The show is an experience. Stepping in, you’re instantly confronted with a triangular seating arrangement. There is no numbered seating or direction of where to sit. The actors eerily stand and sit about from the moments the doors open. There is no backstage. Middleditch says he deliberately tried to make the play as incomprehensible as possible.
“It wouldn’t be fair if we portrayed the autistic world through theatre and made it be very easily decipherable, then the audience will think ‘Oh, that’s a bit tricky but I don’t see what the problem is’.”
“At points the play is incomprehensible as it jumps from one emotion to another. It leads itself to ADHD often a bit more than Asperger’s, but the two overlap so often that it seems a waste to delve into one and not delve in another,” Middleditch says.
“We had non-autistic actors portraying autistic characters because that was important. One person said it would be interesting seeing how actors could go about portraying characters they couldn’t relate to, and I said ‘Ah no, we are relatable. We aren’t alien, we are people’.”
While many do see autism as a disability, both Middleditch and Tsoutsouvas say autism is not a disability; nor is it a superpower. It’s just part of who they are.
“It does seem to be a common reaction, especially when I tell people I’m autistic – as if I was saying I like the colour blue – it sometimes makes them feel uncomfortable, like I’ve disclosed some deep, dark secret they have to offer sympathy for,” Tsoutsouvas says.
“There is a taboo about it, but I find it difficult to understand, if you don’t talk about it no-one’s going to talk about it then it’s going to remain taboo.”
But Tsoutsouvas and Middleditch – and others like them – are trying to make sure it doesn’t remain taboo for long.