The invisible rules

This investigative feature took several months to complete.


The Invisible Rules: An insight into the world of autism spectrum disorder

Rob Wood* has spent 20 years learning what most people never need to be taught.

The learning curve is steep, the curriculum intangible. Every interaction is an unknown experiment and potentially flammable. It’s a process permeated by frustration and loneliness. It’s a journey called Asperger syndrome.

This is his advice to his younger self.

“It will get better, but how much better will depend mostly on how hard you work to adapt. Do everything you can, be patient, it takes time, it takes practice. Remember that people’s conceptions of boundaries are radically different to your own. There are rules. They’re often stupid rules, many of them are superfluous, resource-inefficient, but they’re there. One day, you could have friends, good friends. There are people out there who will appreciate certain aspects of you. Just also know when to shut up. Don’t talk too long about things that interest you. Most people will listen for a while, but ultimately, you should leave the ball in their court. Good luck.”

*

—certain aspects of you.

Rob speaks slowly and deliberately, with an immaculately cultivated English accent. He chooses each word with precision, his fingers pressed in a steeple before him, his eyes slightly glazed. He can recite details of history and politics with effortless accuracy, but facial nuances remain unreadable to him.

—how hard you work to adapt.

Aspergers syndrome is a developmental disorder characterised by difficulty interpreting and responding to social and emotional cues. It is classified as part of autism spectrum disorder (ASD), but signifies high-functioning cognitive and intellectual abilities. Rob was diagnosed with Asperger’s at age eight, while he was suffering from suicidal depression. It was the beginning of a long road to fitting in.

“I did not have a happy childhood,” says Rob. “I was weird. I was not good, quirky weird, I was not Zooey Deschanel weird or that slightly awkward guy who makes funny jokes. I was just unpleasant weird. Ultimately I was very lonely. And in some ways, that hasn’t really changed.”

—there are rules.
Bernadette Beasley is a teacher, autism specialist and director of ASD support network, Places You’ll Go. She says the

rules that govern social behaviour are known as the hidden curriculum.

“Growing up, there [are] things that you would pick up from your peers or from your parents that we call the social curriculum, things that people don’t explicitly teach you, but that you learn,” she says. “People on the spectrum miss all of that stuff. Having those skills taught explicitly by someone who understands the autism spectrum is really important.”

Rob’s mum Emma agrees that the lack of social understanding is debilitating. “When he’s outside the home, he’s on high alert the whole time,” she says. “In the way that you and I would naturally read someone’s body language, we would pick on a topic of conversation with ease, for him he has to work at it the whole time and it’s exhausting. And as a result of that, you get the emotional highs and lows, which are more extreme because when you’re mentally tired, you’re more vulnerable to everything.”

—it takes time.

It took years of trouble at school for Rob to find support. His first school after his diagnosis was a mainstream primary school in Sydney with very few facilities for students with ASD. “You had to beg for funding because they didn’t have a funding process,” says Emma. “He didn’t have any teachers aids in his classroom. He was bullied and it didn’t matter how many times I tried to deal with it, it was like ‘Rob is the child who’s different so he’s the one who has to deal with it’.”

It was only at his next school at the Gold Coast, which had special education facilities, where Rob found the help he needed. “When I began in the special ed class, I could barely write a sentence in that hour,” he says. “When I graduated one and half years later, I won the writers award.”

Emma agrees that the turnaround was immense. “He had a support mechanism. If something went wrong they’d take him for an ice-cream at the beach. It was a very different attitude to educating kids with ASD.”

—it takes practice.

For Rob, social learning can be draining. “It’s so goddamn tedious to think ‘what does this mean, what do your hands mean?’ Trying to understand what a person means behind the actual words, it’s not easy and it’s intimidating.”

But Bernadette says new teaching tools are easing the process. “People used to say ‘stop them looking at that, stop them talking about that’, but it’s about now using their special interests and motivators to help them learn,” she says. “The use of digital technology is becoming more and more prevalent.”

Dr Chek Tan is the head designer of CopyMe, a digital social learning tool for children with ASD which involves mimicking facial expressions. He uses technology as a key motivator to learn. “Traditional tools feel too much like tools,” he says, “which we think attaches a stigma which makes kids feel like they are doing therapy. We wanted [CopyMe] to be like any game anyone can download on the App Store, so that these kids wouldn’t feel different to other kids playing mobile games.”

—good luck.

Rob says while social learning tools have made a big difference, it remains an uphill battle. “As I got better, people responded better to me,” he says. “Definitely, over time. [But] it’s been drilled into me again and again by life, by my experiences, that however far I think I’ve come, I haven’t come as far as I think I have. And I have so far to go yet.”

*Names have been altered to retain anonymity.

Advertisements