'A unique way of communicating': Canadians with autism share challenges, debunk misconceptions about autism
TORONTO -- Around one in 66 Canadians are diagnosed with autism spectrum disorder, according to a 2018 report from the federal government. But autism spectrum disorder still remains poorly understood among Canadians who don't have autism, and the autistic community continues to face challenges that stem from this lack of understanding.
For World Autism Month, several Canadians diagnosed with autism spectrum disorder have shared their experiences with CTVNews.ca.
"The challenge is that I still really don't divulge my diagnosis very frequently. And that's because my experience has been if I do, the person that I've divulged to then does not know what to do with that information. So often, there's essentially radio silence from that person going forward," Aurora, Ont. business owner Vicky McGrath, 52, told CTVNews.ca in a phone interview on Tuesday.
Autism spectrum disorder is characterized by difficulties in communication, social interactions and language. Everyone with autism spectrum disorder experiences autism differently. McGrath, who was diagnosed with autism spectrum disorder two years ago, says she experiences sensory overload.
"I consider it like psychic bombardment, where you're just receiving all kinds of information, you know, from all of your senses all the time, and you're not really able to, to process them or manage them," said McGrath.
On the other hand, Ottawa-based software developer Minni Ang, who was also diagnosed as an adult, says her experience involves getting overwhelmed emotionally and socially.
"Those things to me, they're actually a bigger issue than the sensory stuff," Ang told CTVNews.ca over the phone on Monday. "I mean, if all the emotional stuff is okay, then the sensory stuff starts to grab me. But the emotional stuff to me, it overwhelms. When I get upset, I really can't think, and I can't respond, and I can't do anything."
Reflecting on her challenges, McGrath thinks of them as a "talent" rather than a deficit.
"As opposed to a cognitive deficit, which is I think where everybody immediately goes to, I think it should be considered a talent… and a unique way of communicating and expressing," she said.
Ang, who was also diagnosed with autism spectrum disorder in adulthood, says autism experts who don't have autism are frequently quoted in the media, which often results in poorer representation.
"I think people who are not on the spectrum tend to think that autistic people are stupid, or put it this way, less intelligent than what they present themselves as. And I think a lot of that has to do with the ability of autistic people to speak up for themselves," said Ang.
"What's most disappointing, it's not just that the public has misconceptions, but it's been so-called experts in autism have misconceptions. They publish things like, 'some autistic people lack empathy,' which is… 100 per cent rubbish. No autistic person ever lacks empathy, I can vouch for that," she continued.
The "spectrum" in autism spectrum disorder, refers to the different ranges in abilities and support needs among people with autism. Calgary musician Bruce Petherick, who was diagnosed in his 50s, told CTVNews.ca that the spectrum is more complex than what most Canadians might believe.
"So often, people view autistics being either one or another," said Petherick in a phone interview on Tuesday. "When you think of representation, an autistic character, for instance, in the media is either a savant, or completely non-communicative. The truth is that autistics have a whole bunch of different skill sets and different abilities that are not representative, so people see as either being one end or another, but in fact it's much more a spread of abilities."
Adults with autism often face difficulties in workplace settings, but employers can and do make accommodations. Ang's workplace provided her with noise-cancelling headphones to help her tune out other conversations, and McGrath called for employee performance reviews to be modified.
"The performance review process really needs to be better opened up to accommodate beyond the standard metrics of certain qualities, " said McGrath. "A performance review process should really be much more frequent and probably be done every two weeks in informal check-ins with possibly a colleague or mentor as opposed to the stringent, frightening HR performance review process that is often the case where people are left for months and months and months without any support."
The pandemic has also brought in unique opportunities and challenges for the autistic community.
"I really like working from home because at home I control my environment absolutely. And I can interact with people if I want to video chat, and then if I don't, I can turn off the camera if I want," said Ang.
But for Petherick, he found video meetings can still be a tiring experience and notes that the lack of social interactions can be a challenge for some in the autistic community.
"A previous one of my jobs was working as a church musician and I found the Zoom meetings like exhausting," he said. "I wonder how many autistic people tend to have a problem with social communication. We all still need human contact. And I think the pandemic has made that a lot more difficult."