British Columbia

It's important to tell more stories about autism — including my own

The word "spectrum" is an important part of understanding autism, because the neurodevelopmental conditions people have can vary wildly. 

Autism can be invisible to others and is still often stigmatized

A man places his arms on a rock outside.
Paul Finch says he talks to young people with autism and their families because 'I really had to reinvent the wheel for myself in order to function in society ... being able to help others not go through that extreme level of constant suffering was very rewarding.' (Ben Nelms/CBC)

This story was first published in 2021. World Autism Day is marked annually on April 2.

Most people figure out social interactions in a quick, instinctive way. 

Paul Finch has a system.

"I build up a database in my head of all prior instances in my life where somebody has acted or done something in a certain way. And then I use that as a reference point to try and create an envelope or a schema for how I'm interacting with somebody," he said, explaining how he gets around not being able to intuitively read body language and emotions.

"In some cases, it can be incredibly, freakishly perceptive and accurate. But in other cases, it can be also completely off the mark."

Finch is the treasurer of the British Columbia Government and Service Employees' Union. He's also one of the hundreds of thousands of Canadians with autism spectrum disorder (ASD). 

The word "spectrum" is an important part of understanding autism, because the neurodevelopmental conditions people have can vary wildly. 

For Finch, it meant his childhood journey was similar to a lot of "high-functioning" people with autism now in their 20s and 30s: easily able to learn but judged as awkward in social settings, shuffled to different classes in schools without proper support systems, being intensely interested in topics most kids aren't interested in, and knowing you were different and struggling to "fit in," but not being able to put your finger exactly on why. 

"I didn't really have a proper vocabulary to describe and really put everything together," Finch said. 

"It's not that I [feel] less autistic in any way. It's just as intense. It's just that you learn to adapt and create a bunch of routines to be able to mitigate some of the negative impacts."

Even if you don't realize it, you probably know one or two people with autism who are navigating its challenges in adulthood. They could be people like Finch, who has been public about his autism for years. They could be people who haven't been formally diagnosed, but have many of the symptoms and create many similar routines. 

It could even be the person writing this article. 

A man leans against a wall outdoors.
Justin McElroy is pictured in Vancouver on Wednesday, March 31. (Ben Nelms/CBC)

Strengths and limitations

Trying to explain to someone how I'm autistic can be a challenge.

I can describe it with anecdotes, such as the fact I'm much more comfortable creating a database tracking every aspect of the pandemic than frying an egg, or more excited deciding which park is the 42nd-best in Vancouver (for the record, it's Burrard View) than talking to a stranger. 

I can list off all the symptoms I have: lack of eye contact, trouble reading facial expressions, a slightly monotone, flat way of talking, an intense preference for repetitive behaviour, a distinctive gait. 

I can give a little bit of background on how my parents "dealt" with it growing up: intense speech therapy lessons for years, occupational therapy in schools, some after-school activities meant for "normal" kids and others geared explicitly for those with special needs.

Friday is World Autism Awareness Day, and how autistic adults navigate their lives is an important conversation. It's important for people to know more about a condition that can be invisible to others and is still often stigmatized.

But I can also only speak for myself. My experience can sometimes clash with what people know about autism, either from different people on the spectrum, or how a person is depicted in a TV show or movie they watched. 

It's why there are inherent challenges when individuals try to encapsulate everything about autism.

"I spent years thinking I had to write, 'I don't speak for all autistic people,'" said Sarah Kurchak, a Toronto author

A portrait of a woman with pink hair and glasses.
Toronto writer Sarah Kurchak's first book, I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, is a memoir about her personal experiences with autism. (Submitted by the Kurchak family)

Last year, she published I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, a collection of stories about growing up without realizing she was on the autism spectrum, and then navigating that understanding as a young adult. 

"A lot of people use the spectrum as this sliding scale, where it's not about each individual having their own presentation and stories to tell and needs, but either 'oh, you're either on this end of it, or this end,'" she said. 

'Meet them on the individual level'

Kurchak hopes as more people with autism share their experiences, the more its diverseness will be understood and people's preconceptions will be challenged.

"I've had multiple people now reach out to me and say that they also try to listen to people's footsteps on the sidewalk to accommodate them. And I really thought I was alone on that one," she said. 

"That's another reason where I'm like holy crap, there are all of these things that people already stretched to their limit are trying to do, just to accommodate others. And if we're not even addressing that, what else are we missing?"

Trying to make things a little easier for the next generation is something we all do, but Finch decided to join the board of Autism Canada after his experience talking to co-workers with children with autism, and then meeting those children himself. 

"It's about validating the experience of the kids and trying to encourage the parents to believe their kids, but also just being able to give some basic tips," he said.

"I really had to reinvent the wheel for myself in order to function in society. And that's a very, very slow, painful process that is a trial and error.

"Being able to help others not go through that extreme level of constant suffering was very rewarding."

And it's why I'm telling my story as well. 

My challenges are surely different than those of others, but the more I've pursued my passions and shared my eccentricities and interests, the more folks have reacted in an incredibly positive way.

There's a concept in autism called "masking" — the constant behaviours people do to fit in and appear like everyone else, some done deliberately, some subconsciously. 

The more we know and share about autism, and the more we can put faces to all aspects of it, the more we can create spaces where people have more choice in how they live. 

"There's people who really mean well, and they want there to be three steps, almost like a video game cheat code that they can do, that will make autistic people around them feel comfortable," said Kurchak. 

"I think the best you can tell them is to approach every autistic person you meet like a human, and meet them on the individual level like you would anyone else." 

With files from The Early Edition