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Adults with autism struggle with isolation, uncertainty as pandemic continues

Bi-weekly group forced to cancel in-person community meetings
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Iris Gray says adults with autism have been hit hard by the effects of COVID-19. (Nina Grossman/News Staff)

The inability to socialize during COVID-19 has hit many people hard, but for one Victoria group, the inability to gather has been devastatingly isolating.

Esquimalt’s Iris Gray has been organizing a bi-weekly meeting of autistic adults in Victoria for roughly 10 years. The group – which varies from 15 or more at each get-together – would often go see movies at the Eric Martin Pavillion or hang out in coffee shops. During the holidays they take in the lights at the Butchart Gardens.

For many, the meetings are the only regular social interactions they have.

“For some people, this is the only social time they have, because it’s so hard to make friends,” Gray says. “There’s this thing called ‘masking,’ where we have to hide who (we) really are to fit in. Someone might talk about their cat for five or 10 minutes, but I’m going to go on about my cats for an hour, and you’re probably going to lose interest.”

READ ALSO: Fight for autism diagnosis arduous for adults in B.C.

Gray says autistic children have better access to support and resources, and those who age out of that care or receive a late diagnosis can often feel like they’re on their own.

A 2018 report from the Aging and Autism Think Tank revealed that the vast majority of autism research and programming was geared toward children. Gray herself was diagnosed with Asperger syndrome in her mid-30s.

“Apparently people who are diagnosed as children, they do get some support,” Gray says. “But for those of us who were diagnosed (as adults) you don’t really get any support.”

In many ways, the grassroots group Gray operates helps to fill that void.

“Sometimes we might just talk about Star Wars, but other times we might talk about things…that are hard to deal with,” says Gray, pointing over her shoulder to a construction site where workers are using a power saw.

“If that was going on for a long time, that would be really hard to deal with,” she says. “Everything is really loud…like noise, bright lights, textures. The tags on the back of your shirt can be horrible.

“For most people, it’s just a minor annoyance.”

READ ALSO: Pandemic poses serious problems for children with autism, say Victoria parents

Gray says the group has created a safe space for people with autism to express those frustrations.

“Meeting other autistic people for the first time and knowing that you’re not alone, (that) you’re not the only one who feels like this, you’re not the only one who is bothered by a tag on your shirt, or by the noise of a song or whatever. It’s just such a relief to know that you’re not the only one who has these struggles.”

Gray says one woman who joined the group said she was worried about losing her job.

“She said: ‘If I can’t talk to somebody about what’s going on, I’m going to explode and I’m going to end up having a meltdown at work,’” Gray recalls. “They were just masking all the time at work, and they didn’t have anyone they could be themselves with.”

But of course, the pandemic kiboshed all gatherings, and the group – like many others – was forced to go virtual. The pandemic has not only created more isolation – it’s also created more uncertainty – something Gray says is difficult for many people with autism to handle.

“Things changing suddenly is very hard,” she says. “Even at the grocery store. It’s like, I have to follow the arrows. I have to line up over here, not at the regular cashier.”

Gray says stigma around autism and a lack of resources have made the transitions even more difficult. She’s hopeful the group will be back together by the fall.

“Everybody’s isolated, that’s kind of a given. But for those of us for whom this was their only social outlet, it’s really hard.”

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To read more about National Autism Awareness Month, go to goldstreamgazette.com/tag/autism-awareness-month.

READ ALSO: More support needed for those aging with autism


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