Our People, Our Community

Families get rattled when a loved one becomes disabled. They go through a tough learning and reckoning curve until they realize that we all are only temporarily able-bodied persons.

In sharing his family’s struggles and joys, Julien Bonin provides a unique lens to grasp the complex social fabric of Northern Ontario.

Julien and his family of four live in the bedroom community of Azilda (now part of the City of Greater Sudbury), 20 minutes west from the urban core of Greater Sudbury. He works for the government as a drafter in the Ontario Geological Survey. He also researches about autism services in Northern Ontario for his master’s degree at Laurentian University. Although he thinks that Azilda and Northern Ontario are not glamorous like larger southern cities, he explains how they are thriving hubs of convivial communities full of solidarity.

Julien and his family at Kivi Park in Sudbury, October 2018. Photo credits: Hailey Rachel Photography.

Julien’s 18-year-old son and 9-year-old daughter live with autism spectrum disorder (ASD), and his wife lives with a chronic illness. It can take years on a waitlist to get an autism diagnosis in Northern Ontario. A diagnosis is crucial to be able to access and coordinate the care needed for his children.

Based on his research, from Muskoka census district all the way west to the Manitoba border, there are about 3,000 children with autism in Northern Ontario, Julien says. That’s about 6% of all children with ASD in Ontario.

In northern regions the care needed for every autistic child is limited.

For his daughter, Julien says “an early intervention program called Jasper made a huge difference on repetitive behaviors, like playing the same game over and over again. She [daughter] was mostly nonverbal initially. Now she likes to talk, she’s very vocal”.

Julien, his daughter, and son, at the Hershey store in Niagara Falls. Source: Julien Bonin

Specialized ASD programs help build healthy conversation and social skills in children according to Julien. In Northern Ontario, most of these types of programs were provided by Child and Community Resources (CCR). However, with the changes to the Ontario Autism Program (OAP) CCR no longer offers autism services. Services are now only available through private providers. Families are now required to purchase services for their autistic child and the funding provided by the Ontario Autism Program does not always cover the entire cost of their child’s therapy.

Teachers are also not often prepared or have the training to work with autistic children in regular classrooms in rural communities. This makes schooling an everyday burden for parents.

Julien’s son’s grade 12 graduation. Source: Julien Bonin

When it comes to children like his son who has Asperger’s syndrome, a form of ASD, teachers failed to cope with his sudden outbursts. “We tried private schools where he [son] was just thrown into a regular classroom and then the teachers weren't prepared. So very quickly we moved from one private school to another and then finally out of school for a little bit, and then into the public system where they found out that he had Asperger’s,” Julien recalls.

When there is only one public school in a small community, parents don’t have much choice in the education of children with disabilities whose needs vary and change by the day. If the one school is unable to meet the child’s needs the family must move to another community, which was the case for Julien’s family, or opt to homeschool their child, Julien highlights, although not everyone has option to move or the ability to homeschool.

After years of surviving and eventually thriving, Julien feels more relaxed now as his son’s Asperger’s outbursts have reduced. “It’s all been a learning curve,” he sighs.

The slow arrival of knowledge about disability and autism into Northern rural communities is mainly why acceptance is so hard to achieve, Julien observes.

The hardest thing, he says, is that his children’s disabilities and his wife’s chronic illness are invisible to others. “My wife would be out, and something would happen to my son. And he has a huge meltdown. Then they're [public] coming down on her, saying she doesn’t know to “parent” her child. And my wife would say, it's not my fault; he's [son] got sensitivity to sunlight and that causes a meltdown. They look down at you frequently. They’re not familiar with autism,” he worries.

Julien and his family at Niagara speedway. Source: Julien Bonin

Although people are hard on moms when their child has maladaptive behaviours; for dads it’s not as bad. When Julien accompanies his son or daughter in a public place and the child misbehaves, he gets praised for trying.

Like all social forces, gender inequalities and limited disability awareness are changing in Northern Ontario with some positive trends lining in.

High quality autism services in Greater Sudbury have contributed to building resilience in families, Julien highlights. But that’s just in the city; peripheral communities still need more investment to improve services.

“If you're in a small community and the service provider doesn't work out, or the school doesn't work out, then you're stuck. You are forced to move your entire family to different communities and a lot of people can't because they are working in the natural resource sector (e.g., mining, forestry, etc.) for example and your job is in this town. You can't just pick up and move and try to find employment in another city,” Julien explains.

So urban and rural inequalities relating to infrastructure, professional services, and health care persist.

Julien says, “I hear stories of different families in rural communities up north renting an apartment in Thunder Bay, which is like three or four hours away from their home, to get autism services. The two families take alternate weeks in the apartment; for one week when one family is in Thunder Bay for therapy and then at the end they go back home. The following week the other family goes to Thunder Bay for services.

In Northern Ontario, there are long distances between communities with little or no alternate routes. If there’s an accident or the road is closed due to inclement weather, a detour can take long time like for example four hours and in some cases a detour is not available”.

Yet he sees some silver lining for the future, even though the province’s responsibility for disability services has gradually depleted. “There's a lot of economic and social development potential in Northern Ontario. I still feel like the north is underappreciated or underdeveloped. Still, there's a lot of potential,” he says.

One example is that rural broadband is improving in communities like his. Julien has been able to do his job from home ever since one of his coworkers got Covid – the first person in Sudbury. This flexibility has eased his wife’s care responsibilities at home, Julien says. Now he can work later, or sporadically, letting his wife focus more on her health and interests.

But in some remote communities, the internet is still dialed up through a home phone and that makes it difficult to do online work or remote therapy that requires high speed internet, Julien says.

Technology is a mixed bag when it comes to autism services. On the positive side, seeing the therapist remotely means that his children’s routine is not disrupted; his son has a more difficult time with disruption with his routine, and the one- to two-hour commute is saved. Not just that, but remote classrooms have also proven to be effective for his son who has to deal with less distraction when he is at home.

But for Julien’s daughter, remote therapy or school been a disaster. She did not have the communication or social skills necessary to focus and pay attention to the lesson. He says, “You need a prior relationship with the therapist or the teacher before you do online.” Without a familiarity or relationship with the therapist through some in-person interactions, it would be nearly impossible to conduct behavioral therapy online for his children, he explains.

Julien and his family outside a water park in Chelmsford. Source: Julien Bonin

Serenity and easy commutes in Azilda mean that Julien’s daughter and son have an environment that puts less pressure on them. “There is relaxed pace in the quiet neighborhood and in our house; we have room. Thankfully, we're not stuck in a small apartment. We can go out for walks or bike,” he explains. The lesser need for child care, or parents not having to find rides for their children, help Julien and his wife spend more time with their daughter and son.

Julien finds the Azilda community is an extended home for his son and daughter. “My little girl, when she goes out, say to a yard sale, she gets excited about everything, seeing something totally random. Then people are like, oh, that's so fun. So, very accepting in that way,” Julien says.

However, since there aren’t many children with disabilities in their community, there are not many opportunities for recreational activities. “I tried sporting activities like soccer but the support just was not there to meet the needs for my autistic children. That’s the downfall of a small community,” he notes.

Azilda and Northern Ontario are adapting to autism and disabilities, Julien feels. It may be something new to many community members.

But what’s been encouraging to Julien is how he and his wife are able to bring up their children with care in an equally caring and thriving northern community.