April is Autism Awareness Month which aims to celebrate and promote the acceptance of autistic people.
Conversations around autism have evolved a lot over the years. We recognize that many people still use person-first language when talking about autism or other disabilities (i.e., person with autism or person living with autism). We prefer to say “autistic person” rather than “person with autism.” This is an intentional decision made at the request of autistic community members, rooted in disability justice and neurodiverse language that holds that autism is an identity, not as a medical condition that exists solely because it can be diagnosed and treated as something that should be cured or treated.
In honour of Autism Awareness Month, we spoke to several people on the spectrum to share a little about themselves and their experiences being autistic. Though we reject the medical model approach to autism, in this story autistic people share reflections about getting diagnosed and how that impacted them.
Zak Martin was diagnosed with autism around the age of five-years-old. “My grade eight teacher told me I wouldn’t be able to pass high school or college,” he said. “But I sure proved them wrong because I graduated high school as an Ontario Scholar and I graduated college, from the Recreation Leisure program, with distinction.”
On top of that, he works as a dietary aide, ski instructor/patrol, and volunteers with St. John Ambulance. He’s also an airplane enthusiast, being able to identify planes just by looking at them.
Despite that impressive resume now, when he was starting out in the job market, he feared his autism would be used against him if he mentioned it.
“I think the main thing people with the general public need to know about autism. They’re all very unique in their own way,” he said.
For Martin, he still has difficulty with social skills at times despite being a bit of an extrovert. Interacting with others helps him practice those skills, but the current pandemic does not make it easy.
“It’s hard for me not getting out to see anybody without worrying about this nasty little virus that’s wandering around,” he said. He holds video calls with friends as much as he can under the pandemic, but it’s not quite the same.
Allison Keats is a 43-year-old studying civil engineering at Conestoga College. She excelled at the maths and physical sciences growing up, but had difficulties with social interactions. It was only recently learned that she was autistic.
“Until about five years ago when I had a roommate that was tested, and she and I were talking and we realized that a lot of the same problems she was describing were ones that I had encountered,” she said.
Receiving her diagnosis led Keats to finally understand why she felt so different from others. She just never had a word for it until her diagnosis.
“I struggle with [social interactions]. I usually have to know someone for a little bit before I get a sense of what I call their ‘baseline’ of there is. What they’re normally like. Anything above or below, this means that either they’re happy, sad, et cetera.”
She isn’t alone in her situation. Many women have been diagnosed later in life, even leading to articles specifically written for women who wonder if they are on the spectrum. Men are diagnosed four times more frequently than women, with studies suggesting there is either a biological reason or that women were being under-diagnosed. That gap may be due to women being more adept to camouflaging their autistic traits, according to some studies.
“And women don’t always present the same way. I mean, take a heart attack, for example, women don’t present the same way as men for that. And therefore, often don’t get noticed that they’re having a heart attack because the symptoms are slightly different,” she said.
Meanwhile, the pandemic for her has been a series of ups and downs. She doesn’t get as much practice with her social skills and staring at screens is just tiring. On the other hand, her lectures are being recorded for once, which helps as she does have some learning disabilities.
Philip Lerner is a University of Waterloo student as well as a member of the Ontario Autism Coalition. However, for this interview, he was only speaking on his own behalf and his experiences.
He describes his own autism as being on the “milder side” of the spectrum. It often expresses itself in the form of “flapping.”
“The way I like to describe it. For some people when they want to release energy they will probably go exercise. For me, whenever I have a strong emotion, my brain automatically goes to flapping my hands when I want to release that energy,” he said. Others autistic people may engage in other forms of “stimming” which can range from fidgeting with an object, or rubbing their ears. It can range widely from person to person, but generally helps with anxiety, relaxation and focus.
For Lerner, he wants to see autism awareness evolve to autism acceptance. Awareness is good, but the real goal is getting to the point where autistic people no longer have to constantly explain or apologize for themselves. He talks about “masking” a practice amongst autistic people to appear “normal” for the sake of others. It can be described as being customer service mode; doing it for long stretches at a time ends up being mentally and emotionally exhausting.
“Masking is definitely a big issue. It’s actually a very useful skill in some situations. For example, if you’re in a job interview. You genuinely don’t want to show off all of your autistic traits. Although, in an ideal situation even that would be fine,” he said, touching on the common fear amongst the autism community.
Ironically, the pandemic has given him some respite from having to mask himself for people.
The federal government’s 2021 budget has dedicated millions to support the creation of a national autism strategy — as this rolls out, we will continue to advocate for autistic people to lead the conversation and support efforts to centre their voices.