This is part two in a three-part series on children and youth living with autism in Hope.
When Robert Fresco focused his camera on his twin children, he didn’t realize he would be recording the story of a family learning to live with autism.
Hundred of hours of home videos are stored in the basement studio of Fresco’s Silver Creek home, artistically shot snippets of life with his twin children Fraser and Hallee, all of which he has watched more than once. Parts of this body of work will air on the CBC later this month in the documentary Love, Hope and Autism.
Gathering the 20 terabytes of film has been an ongoing project since his children were born 21 years ago. For a lot of that time he has known his children through the lens of a camera.
“It’s me following Fraser…ever since I can remember. I’ve shot video of him under every conceivable situation,” Fresco said. “I have more stock footage of an autistic boy than anyone in the world.”
Focusing the lens on his children was what came naturally to him after a career in the film industry, working on everything from feature films to T.V. shows to music videos, many award-winning.
It came so naturally Fresco rarely put the camera down. He described one instance where his son Fraser threw a rock at another autistic child he was playing with. “I had to make a decision, do I videotape this or do I stop Fraser from throwing the rock?”
The documentary follows Fresco, his two twin children Hallee and Fraser, and their mother Shannon, from birth up until their twenty-first birthday.
Fresco took a less familiar role in front of the camera for this project and what he had imagined as a kind of love story between himself and his autistic son, morphed into a family portrait under the guidance of writer and director Helen Slinger.
“Ultimately this CBC version is really more about the family than it is about Fraser,” Fresco said. It is a family portrait that doesn’t always paint Fresco in a favourable light.
At birth, his twins were given equal camera time, but as they grew and Fraser was diagnosed with autism spectrum disorder, Fresco became fascinated with filming Fraser’s world. His daughter began to feel neglected, a rift that only widened as the family moved to Hope in the early 2000s.
“She actually slams me about it, she says that I was not there for her,” he said. “And the truth is I was, but only in physical form. I wasn’t there for her. But I don’t know what I could have done.”
Fresco and his daughter confront their relationship in the documentary, and despite being portrayed as he calls it the “delinquent father” in the film, he says he is at peace with his decision to bring his personal life to the screen.
“I’ve got nothing to lose because no matter what, it will be entertaining to people,” he said. “And I also know I never did anything bad to the kids, other than not giving Hallee the attention she needed. The scars that we all have, we get anyway.”
During the filming of the documentary, Fresco came to a realization that he too was possibly on the autism spectrum.
“I actually admit that I’m on the edge of being autistic myself, like Asperger,” he said.
He is very good at his creative camera work, but adds there are things outside this on a regular “life scale that I kind of block out, I can walk through it and be one-minded about it and sometimes not mindful of all the things that are around that, particularly with the family.”
While Fresco is at peace with the good and the gritty sides of the family history portrayed in the documentary, he has not given up on his original project.
“I like to think of it as kind of a love story between me and Fraser because that’s really what it is,” he says of his personal project. He and Fraser spend summers together in Hope, and they are very close.
But there are challenges to living with, and loving, an autistic child. This is a reality that is facing an increasing number of families as autism becomes the most commonly diagnosed neurological disorder in Canada.
“It’s always a struggle having an autistic kid because you just don’t know what he’s going to do,” he said, adding he must be constantly vigilant when he is with Fraser. “You can’t leave him alone for a minute, you have to be watching or being with him the whole time.”
There are also a lot of things Fresco and his family don’t know about Fraser, for example what he enjoys and learns in school, as Fraser sees these spaces as completely separate. In fact, all of Fraser’s worlds —his home in Hope with his father, his school, his home with his mother in California —are completely separate in his mind.
He also retreats into his own world, one his family knows little about.
“He seems to space out and go into what Shannon and I call autism land. So he goes into autism land and he has his own thing going on in there, that we don’t know anything about.”
Life with Fraser is very different than life with children not on the spectrum. Silence is golden, and Fraser will rarely express himself through words or answers questions.
“It’s like a Rubik’s Cube, for him to give you an answer,” Fresco said. “Imagine trying to have a conversation without asking a question.”
But there is also beauty in Fraser’s way of life.
“One of the most difficult things for any of us to do, as human beings, is to just enjoy the space of being with somebody else without having to talk about anything,” Fresco said. “I can look at Fraser and know by the way he is, kind of how he’s feeling.”
As Fraser turned 21 this past year, together his twin sister Hallee, the question of what will become of him looms large. Graduated from high school but still unable to hold a job or take care of himself, Fraser could become one of the more than 80 percent of adults with autism spectrum disorder who are unemployed.
“He really can’t cope on his own, he is not able to function in society on his own. He does not understand what a job is, he doesn’t get it that you do the same thing over and over and you get paid for it,” Fresco explained.
This was one of the main motivations behind pursuing the film project to begin with, to raise money for Fraser’s future. Proceeds from the film, when it goes on the festival circuit, will go into a trust fund for Fraser to help him in his adult life.
The documentary Love, Hope and Autismairs on the CBC March 18 at 9 p.m.
This series is exploring living with autism in a rural community. If you are a person with autism, family members or caregiver who wants to share your story, contact firstname.lastname@example.org or 604-869-4992.