For 18-year-old Serena, music was always a place of comfort for her. But, years ago, as she was just entering high school, that all changed when her music teacher threw a chair at her out of frustration.

“It was hard because her behaviour changed, but she never told us because she thought she’d get in trouble,” says her mother Lisa. Eventually, when one of Serena’s teachers alerted her parents, Serena was finally able to get the help she needed from a therapist.

Even if it took a while.

But Serena—a young adult living with autism—isn’t the only one who’s gone through this. Her story is only one of the nine shared by other youth with neurodevelopmental disorders in the latest POND Youth Digital Stories project.

Through an arts-based approach, the project amplifies the voices of youth through film as they address their challenges and triumphs, gaps in the healthcare system, and solutions, when it comes to mental health.

Work for the stories was done virtually over the pandemic, where the youth involved supported one another through building their stories. And, ultimately, despite their different approaches and experiences, their individual stories wholly came together to share the same messaging: mental health matters.

Done in partnership with Holland Bloorview and CAMH, the project was funded by the CHILD-BRIGHT Network, part of the CIHR-funded SPOR program, and the Ontario Brain Institute.

Spearheaded by then CAMH research trainee Dr. Patrick Jachyra, the Pond Youth Digital Stories project was, as he says, crucial in understanding the crisis in a sometimes overlooked population.

“The youth who participated truly exposed how we need to treat mental health seriously just like we would treat physical health seriously,” says Dr. Jachyra. “One of the youth said it best: ‘if you have diabetes, you’ll get a whole package of support; but with mental health, you’re on your own.’”

Combining both photos, audio, and filmography, nine youth shared their stories ranging from suicidal thoughts, to interactions with medical professionals (the good and bad), to the coping mechanisms and tools they received.

“If we’re actually going to take mental health seriously, we need to stop underfunding it and understand the importance of language and interactions to support mental health,” says Dr. Jachyra.

Dr. Evdokia Anagnostou, a Senior Clinician Scientist from Holland Bloorview and one of the project supervisors, agrees.

“We learned from the youth that a lot of their mental health care happens outside of the mental healthcare sector,” she says. “Mental health is everyone’s responsibility.”

Based on the results from the project, the team is now working on creating toolkits for clinicians to help address mental health concerns. These toolkits will answer questions, list resources, as well as provide tips for how to broach topics amongst neurodivergent youth. Eventually, more toolkits will be created for school boards and parents, as well.

“We have been hearing so much more about the mental health of young people from young people in recent years, but these individuals may not be at the table or always included in those discussions,” adds Dr. Yona Lunsky, the Director of the Azrieli Adult Neurodevelopmental Centre at CAMH and one of the project supervisors.

“I think these films will resonate with other youth, families and providers in ways that what we teach through our textbooks do not.”

And that’s why youth like Serena, chose to participate.

“It’s important for me to learn to stand up for myself and make other people aware we [the youth] have a voice and it needs to be heard,” says Serena.

“It’s important for health professionals to know how I feel inside. No one should have to wait to get the help that they need.”

To view the youth stories, you can visit the POND Digital Youth Stories project here.