Collaboration and community support needed to address mental health challenges in children with neurodevelopmental disabilities

This story is the second in a three-part series on how University of Calgary researchers and the United Way are making progress in the areas of raising successful kids, building strong communities and overcoming poverty. Together, we can improve lives in our community.

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While an increasing number of people are starting to become more aware of their mental health needs, there is still a significant gap in understanding the effects mental health challenges can have on those diagnosed, especially neurodivergent children. Neurodevelopmental disabilities (NDD) are extremely common but yet misunderstood and overlooked. Neurodevelopmental disabilities include autism, cerebral palsy, intellectual disability and fetal alcohol spectrum disorder (FASD).

Werklund School of Education researcher Dr. Carly McMorris, BA’06, PhD, has dedicated most of her research to closing this gap. While working as an associate professor in the School and Applied Child Psychology program, McMorris has spent much of her career researching the mental health needs of neurodivergent youth and young adults. McMorris, who is also a registered child clinical psychologist, is the director of The ENHANCE Lab, which aims to promote the mental health and well-being of children and youth with an NDD and their families.

Dr. Carly McMorris
Courtesy Carly McMorris

Families often struggle to find care 

McMorris’s work has sought to fill the gaps in care that can often happen for families of neurodiverse youth. To do so, she has primarily focused on children who have been diagnosed with an NDD as well as a mental health issue such as anxiety, depression and suicidality.

“Autism, for example, is what’s considered to be a developmental condition that starts early on in childhood. In health-care systems, what often happens is that when a child with autism experiences a co-occurring mental health challenge, like anxiety, it’s unclear who should be treating that,” says McMorris. 

“Families don’t really know where to go. Clinicians may not feel comfortable in addressing mental health issues in these kids, they say they don’t know a lot about autism, but they do know a lot about anxiety or vice versa.”  

McMorris refers to this as a “hot potato” situation, where families are tossed back and forth between multiple clinicians who specialize in different areas. With extremely high waitlists and few resources to address these co-occurring challenges, it’s a huge barrier where families are lost and unsure where to go. 

Facing Your Fears program

The need McMorris saw in the community inspired her to implement the Facing Your Fears program in her research. Originally founded at the University of Colorado’s School of Medicine, the program focuses on youth aged seven to 14 years with autism and anxiety. The goal of this treatment approach is to provide families with care that acknowledges both their child’s autism as well as their anxiety. Sessions focus on helping the child and parent identify fears, practise managing anxiety, and developing coping strategies.

McMorris and her team started running the program four years ago, funded by the Alberta Children’s Hospital Foundation. To date, they have run eight different groups, organizing with community partners and facilitators across Calgary. She notes improvements in quality of life for both the child and their caregivers. In addition to reduced anxiety, children show improvements in social skills and regulating their emotions.

“I remember one mom highlighted that her kid has never been able to go to a full day of school because of anxiety and sensory challenges. He’s 14 and now he’s attending school full time.” She adds that program participation has also improved parent functioning and self-efficacy.

Solution is a community one 

If there is anything that McMorris’s research has shown, it’s that coping with co-occurring diagnoses takes community support. It takes the collaborative effort of several people including clinicians, educators, and other families to support children with these complex conditions. 

However, community support doesn’t always come easily for parents. One of the biggest challenges families face is that their mental health concerns aren’t taken seriously, whether due to stigma or lack of clarity in treatment options.

“Throughout the system, I hear people say you can’t have a mental health concern if you have autism, that’s just your autism,” says McMorris. It’s often that people dismiss the idea that co-occurring diagnoses need separate attention.

“Raising awareness and debunking this stigma should be the norm. They will always have mental health concerns just like anyone else. When will we as health-care providers acknowledge that and provide the appropriate treatment?”

United Way supports child development in Calgary 

McMorris’s research is just one example of the many ways UCalgary researchers are working to make a difference in our community by helping kids succeed. While her research is not associated with or funded by United Way, it is closely related to initiatives the organization supports.

Poverty, food insecurity, mental illness, domestic violence, and lack of early supports are all risk factors that could prevent children from reaching their developmental milestones. According to the United Way, only one in five kids who need mental health services receives them, and over three million Canadian youth are at risk for depression.

That’s why United Way works with partner agencies to invest in early-years and mental health supports for kids, and education and employment opportunities that help youth successfully transition to adulthood. By investing in their lives — from early childhood to young adulthood — we ensure kids in Calgary and the surrounding area have everything they need to thrive today, and in the future.