Supporting neurodiverse youth is a family affair for new Azrieli professor

Dr. Linda Nguyen understands the important roles that siblings have in families, because she’s seen it first-hand. Her own sister, who is 18 years older, was central to her life after her family immigrated to Canada. Her parents worked long hours, but Nguyen’s sister was always there for her. 

“She had really important roles in my life; she was like a second mom to me,” says Nguyen, PhD. “She really took care of me growing up, and she inspires and motivates me all the time in my work.”

Nguyen, the new Azrieli Accelerator Assistant Professorship in Youth, Sibling, and Community Engaged Research in the Faculty of Social Work, is focused on supporting the families of neurodiverse youth, including those with autism spectrum disorder. In her PhD research in rehabilitation science, she noticed that, when most of the research mentions “family,” it was often shorthand for the children and their parents. Siblings were often not part of the story, even if they wanted to be.

“I’ve heard from siblings with lived experiences, that they feel ignored and in the background; they don't even get acknowledged by the health-care professional,” says Nguyen. “But what I've heard the siblings say is that they're there for a reason. They have other things to do in their lives. They don't have to be at the health-care appointments — they want to be there.”

So, Nguyen began to partner with these youth — some as young as 12 to 14 years old — to find out what they needed to better support their family and what they needed to support themselves. 

“The siblings are going through their own identity development and transition to adulthood,” says Nguyen. “They’re graduating from high school, finding their first job, even deciding if they want to move away from home, which is also a struggle because they know that if they move away and then come back, their roles will change over time.

"Siblings need their own mental health supports. Many of the siblings I work and partner with say they needed to seek mental health support on their own, because they often feel their own experiences growing up were ignored.” 

Three pillars of research

As Nguyen formally begins her professorship, she says her work around supporting siblings is the first pillar of her research. Her second pillar will engage with neurodiverse youth themselves, finding ways to train and work with them to ensure that their voices are heard, so their critical perspectives are captured in the research. The final pillar is to mobilize the knowledge that is co-created with siblings, neurodiverse youth and their families. 

“How do we bring that to the people who need to use that knowledge, whether that's policymakers, community organizations, as well as the youth, the siblings and their families?” Nguyen says.

This is where the transdisciplinary element comes in. Nguyen’s research and education to this point has been in health sciences with her bachelor’s degree, then a master's and PhD in rehabilitation science at McMaster University. 

“I’ve worked with occupational therapists, physiotherapists, physicians, researchers and policymakers,” says Nguyen. “And these connections can be leveraged to create meaningful and impactful programs and pathways to services. 

“That's what makes me so excited with this Azrieli Accelerator Assistant Professorship. To work not only within the Faculty of Social Work, but also across different faculties and collaborating with other researchers, institutes, groups and partners. For example, the Alberta Children's Hospital Research Institute and the O'Brien Institute for Public Health, connecting with these partners, and advancing UCalgary’s transdisciplinary strategy.”

Right at home in the Faculty of Social Work

Nguyen says Social Work is the “perfect fit” for where her research is right now because of the faculty’s focus on the evolving third pillar of her research — mobilizing knowledge to make change. As she shifts her focus to include more of the “macro level” to address national and international policy change, she certainly feels like she’s come to the right place.

Visiting the faculty for the first time during its annual research symposium (fittingly focused on transdisciplinary research), she met a number of kindred souls with academics also looking to make big changes. 

Social work is built on a foundation of pursuing social justice. Much of the related research is explicitly done to address the structural issues that lead to injustice and inequality. So, in social work “world-changer” is part of the job description. You’ll often find social workers at the core of transdisciplinary hubs because the connecting profession is focused on bringing diverse voices together to find shared solutions that are informed by those most affected by the issue.

“I'm already hearing about the social work students and faculty who want to create systems change,” says Nguyen, “And that's exactly what I want to do in my partnership and work with communities, individuals and families. I want to start having conversations and dialogues about how to move our research forward to create that systemic change. So, I think this faculty and position is the ideal fit with the work I'm already doing — work that is already aligned so well with social work practice.”

Wealth of partnerships

Nguyen, who is also supported by a Canadian Institutes of Health Research Patient-Oriented Research Award, already has a good head start on this work as she brings the wealth of professional and personal partnerships she’s forged nationally and internationally — including her postdoctoral research work at McGill University and collaborations with groups in the Netherlands. 

As she moves into her new role, she says she can’t wait to begin forging new partnerships in communities across Alberta and to be part of UCalgary’s rapidly growing strength in transdisciplinary health research, including working with Alberta Children's Hospital and Alberta Children's Hospital Research Institute, as well as the O'Brien Institute for Public Health. 

“These are big problems we’re addressing in supporting neurodiverse families,” says Nguyen. “I'm excited to see where things are going, not only with working with UCalgary researchers, but also in working and collaborating with communities across Alberta, which is so important. I'm really looking forward to working together with everyone, and I'm thinking, ‘How can we do this together — provincially, nationally and internationally — in the future?’"