How a child's autism diagnosis opened a new world for Penticton family - InfoNews

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How a child's autism diagnosis opened a new world for Penticton family

Belinda Fries said her social media presence doesn’t “light up blue” April 2, or for the rest of the month, and she instead celebrates Autistic Pride Day June 18 — an initiative that originated with Aspies for Freedom, recognizing the importance of pride for autistic people and its role in bringing about positive changes in the broader society.
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May 01, 2020 - 6:30 AM

You can almost feel Belinda Fries bristle when a wave of blue washes over social media for Autism Awareness day.

The sharing of these posts on her friends’ pages is well-meaning, she knows.

But in the years since Fries realized her son was on the spectrum, she’s thought a lot about what “awareness” in itself implies and the negativity that the blue light casts on neurodiverse people.

It’s why, the Penticton woman said, her social media presence doesn’t “light up blue” April 2, or for the rest of the month, and she instead celebrates Autistic Pride Day June 18 — an initiative that originated with Aspies for Freedom, recognizing the importance of pride for autistic people and its role in bringing about positive changes in the broader society.

That said, if you get to know her even a little, it’s clear that every day is Autistic Pride Day.

Fries’ four-year-old son was diagnosed with autism two years ago. It meant a lot of things to her family — like order instead of chaos and cooking classes instead of hockey, tuning in to a new way of communicating and delayed milestones for things that some parents take for granted.

All of which may require a different path forward than she originally anticipated when she became a mother. None of it, she explained, is cataclysmic or in need of being fixed.

“I think I had a little bit of a different take, right away. Everyone said, ‘he’s not talking,’ and ‘he’s not doing this or that,’ and ‘look at his toys, look at him.’ And I saw a happy child learning in his own way,” she said.

In many pictures posted online, Fries' pride shines through. She happily shows off her oldest boy — he’s properly messy and like any kid his age, sports a mischievous glint in his eyes. He plays with abandon in each photo, reflecting in still life images what she wants to preserve in his childhood.

“I wasn’t blind to what others were seeing or trying to bury my head in the sand,” she said.

She just didn’t agree with the idea that the baby who was expressive in so many different ways should be put into a situation where shame frames the view of his life.

So, as appointments started to stack up, she said so. Fries isn’t one to pull any punches. She speaks directly, if not bluntly, and disabused anyone who said otherwise of the notion that her son had to be “fixed.”

And, she said without much concern, it ruffled some feathers.

“I don’t have a lot of friends in the local autism community,” she said. “It’s really divided.”

Since coming to terms with the fact she was going to forge a different path forward she’s realized there are several streams of people navigating autism.

Autism Speaks is the most well-known organization that once was the representative of all humans on the spectrum, but they’ve garnered a fair bit of controversy over the years.

In 2009, for example, the organization released an ad titled “I Am Autism” that claimed that autism “works faster than pediatric AIDS, cancer and diabetes combined” and ensures that marriages will fail, financial ruin will ensue and that it will “rob [parents] of [their] children and dreams.”

It was widely derided by autistic people and the organization has since changed its tack. It now includes a rainbow instead of the traditional blue in branding. It illustrates a mandate to “embrace the diversity” of the autism spectrum.

Fries, however, still believes that it presents autism as a series of deficits, largely focused on areas like interacting socially, communicating, sensory challenges, and repetitive behaviour patterns that need to be corrected.

Fries is among those who want to focus on what is working and build acceptance of neurodiversity.

That means viewing autism and neurocognitive disabilities as natural differences rather than afflictions.

Bringing that to life on a personal level, she’s homed in on her son’s different communication style rather than try to change it.

“It can be hard to pick up what he says, he’s not quite verbal, so I have to pick up his cues,” she said, noting online recently that she still finds medical professionals unaware of the way her child with autism is able to communicate.

“He shows me things and shows me words and brings me something, do something myself if I don’t quite understand.”

She’s also learned a lot about herself through this process and has embarked on a journey of self discovery.

“I can see so much of me in Jude as a child,” she said. “Our interests are so similar … our sleep patterns are the same, in that we don’t sleep. We have some of the same sensory similarities. And as I’ve been thinking about him going to school, I’ve thought about all of the struggles I had.”

Autism wasn’t really on the radar back then, particularly in girls, but Fries has started to wonder if her differences are connected to her son’s and in her conversations with autistic adults, she’s found solace. The autistic adult community, she said, fights so hard for kids like her son and don’t get enough credit. 

Test results are pending, but she suspects she may be on the spectrum. But like so many others she’s spoken with, she’s also been a bread-winner, a professional, a traveller, a homeowner and an independent woman. She has been no more hampered in that effort than anyone else and that’s what she wants her children to see.

“I’ve always had good jobs and I pay my bills, and could tailor my entire schedule to what works for me,” she said, adding that the schedule control has helped with burnout and meltdown.

These are the things she wants her children to see and why she's pursuing an actual diagnosis.

"I feel like more adults need to get tested so there is another side, and they have somebody who can advocate for them — it's my duty," she said.

Every other route has seemed like cruel punishment.

"They were asking for 20 to 30 hours of therapy a week. I can’t work 30 hours a week and I am expecting my kid to do this?" she said. "I want to treat the child, not the autism.... He needs help with communication, not speech and he needs help with life skills and that’s what we focus on."

This isn't to say she's not getting professional help. Fries has two appointments for life skills a week and they see a speech therapist every two weeks for an hour.

"He has plenty of time to still be a child but that’s not the norm for kids on the spectrum, they are usually in a lot of therapy," she said. "How can you not question this?"

As of March 2018, 1 in 51 children ages 6 to 18 in British Columbia have been identified as having ASD. In Canada, ASD is 4.5 times more common in boys (1 in 42) than in girls (1 in 189).

It is often primary caregivers who first notice behaviours consistent with ASD in their child. For example, when the child does not meet typical developmental milestones.


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