Through the lens of a child

Ten-year-old Hugh Garber wants to be a chef when he grows up. He is currently working with his father to perfect mac'n'cheese.

Hugh also has autism. Last year, when he was nine, the Bedford boy wrote for Autism Nova Scotia's publication Autistics Aloud, explaining how he understands himself.

“My name is Hugh Garber, I am nine years old and I'm in Grade 3. I have Autism. Autism means your smart. It means to me that my brain works differently. It's okay to have Autism. Autism makes me good. Maybe when I grow up I could do talks about Autism on a stage. I wish people would be patient with people that have autism. I love that everybodys different! the end,” he wrote.

Whatever you think you know about autism, this is the one thing to remember: everyone is different.

Generally, people with autism spectrum disorder (ASD) struggle with social interaction and communication, exhibit repetitive behaviour and hyper-focus. But generals tell you nothing about the specific person, and no two people with autism are the same. Autism isn't something added on top of who a person is, an extra layer or filter. It's woven into the fabric of the person — how they think, perceive the world, and understand themselves.

“We made the decision very early on to be upfront with Hugh and talk to him about what autism was in a way that he understood, at an early age,” says his mother, Allison Garber. “And as he's gotten older, we've been able to provide a bit more detail. So that he understands why he does feel different sometimes at school. And that different is OK.”

THE DIAGNOSIS

Garber first started noticing differences in Hugh when he was about two-and-a-half. He was her first child and had been hitting regular developmental milestones, but as the family started socializing more, Garber noticed differences in how other children interacted with the world compared to Hugh. By the time he was nearly four, the differences were clearer. For example, Hugh would phrase everything as a question, a trait common to many young children with ASD. Loud noises were not just startling, but intolerable.

“At that time, he had seen the movie Toy Story 3. And it was all he talked about. Lots of kids get caught up on movies,” remembers Garber. “But with Hugh, looking back, it was just so pronounced. To the point where we went to Florida on a family vacation, and all he would say was, ‘Does Woody wear a cowboy hat?'”

Initially, doctors were reluctant to have Hugh assessed since he was doing well in other areas. But after her daughter was born, Garber pushed for an evaluation. Because there are so many children waiting to be assessed, there was a delay. Eventually, Hugh went to the IWK autism team for an assessment, where he was given an official diagnosis of autism spectrum disorder.

For Garber, as with many parents with autistic children, the diagnosis brought fears of the unknown and sadness for the loss of an imagined future.

“I remember I was so shocked when they gave us the diagnosis. They said, ‘Do you have any questions?', and I looked at them and I said, ‘Will he ever get married?' That was honestly what I asked in the moment. And they were so gracious. But I was just in such shock that this whole life that I had imagined as a parent was gone.”

That initial reaction has become something of a measuring stick for how far Garber, her husband, and Hugh have come in understanding what that diagnosis really meant.

“(It's) knowing that it was never my life to map out. It's Hugh's life to map out, just like my daughter's life is hers. And I think that's one of the most beautiful things that came out of that diagnosis. It reinforces the message about what parenthood is really about, which is nurturing your child and giving them the love to become the best person they can be.”

The afternoon of the diagnosis, Garber called Autism Nova Scotia, a conversation that began changing a frightening unknown into something that could be understood and managed.

“It was such a comforting call," Garber says, remembering the resources they were able to tell her about.

“She didn't sugar coat things, that it was going to be a different way of parenting."

But it left Garber feeling reassured there was information out there for her to access.

NOT ENOUGH

The past six years have been full of challenges and triumphs. Early intervention is critical, but for every thousand children in Nova Scotia, just over 14 have autism, and there are not yet enough resources for every autistic child to receive the necessary support. It's been a strain for Garber since Hugh started school.

“We're exhausted. That's been our experience, we're absolutely exhausted," she says.

Hugh's now in Grade 4, and Garber says the family has "had to fight tooth and nail every single year" for him to access educational assistant, speech pathologist support and more.

It's a problem of resources, she says, not a deficit in intentions or skills. The family collaborates with his teachers to create strategies and plans.

“I want to make it really clear that his educators are fantastic. He has an exceptional team at his school," she says. "But they are underresourced. They have far too many children requiring support and not enough people to provide that support.”

For all these difficulties, Garber recognizes her family is fortunate. Garber and her husband are universityeducated, middle-class people with experience working in government. Garber also serves as the communications representative on the board of directors for Autism Nova Scotia. In short, they are armed with the knowledge and experience that helps them push for the things Hugh needs — and she doesn't think it's right.

“It is often the parents who are the loudest that are allocated support for their kids, and that's not right. It's absolutely not right. Because there are many families out there who don't even know that they can access support, or their child has not received a diagnosis because they don't have access to a family physician, and until their child has gotten to school, none of those issues have been flagged.”

Hugh is learning to navigate the world he lives in, both like and unlike other 10-year-old boys. For instance, his parents had to help him understand social niceties.

“When someone says, ‘Hi, how are you?', he'll lay it out for you. And then he'll say, ‘Oh, right. I'm just supposed to say, I'm good.' Just all these social customs and nuances that we have that, when you actually break them down, don't really make sense.”

Instead of telling his aunt he doesn't like the cooking, he's learned to say thank you.

“We had to teach him about how to do a white lie,” says Garber. “And he looks and he's like, ‘I just told a white lie!'”

As Hugh has matured, he's begun to advocate for himself. Last year, he invited Halifax Mayor Mike Savage to see him speak to his schoolmates about autism.

“He has made us remarkably proud. That roadmap I had built when he was four years old and was so upset about it crumbling… I couldn't be happier about where Hugh is today. And I'm glad that we're on this new path, and that he's at the helm of it. It sounds so cliche but he's taught us so much about seeing things in the world that we never would have seen before.”

DID YOU KNOW?

If you're looking for a better orientation to ASD in Canada, take a look at this report commissioned by the government of Canada in 2018. Nova Scotia, Prince Edward Island and Newfoundland each have their own respective autism advocacy organizations. These organizations exist to help families access and advocate for support.

Autism Nova Scotia can be found at autismnovascotia.ca. The Autism Society of PEI is at autismsociety.pe.ca. And the Autism Society, Newfoundland Labrador (ASNL) is at https://www.autism.nf.net/.

If you are a parent who believes their child might be on the spectrum, the Public Health Agency of Canada has information on what to look for and how to proceed.

Ten-year-old Hugh Garber is an aspiring chef, specializing in mac'n'cheese.