Research project becomes reality as alumni shape access to care for Autistic adults
“Our platform was designed by Autistic adults, for Autistic adults, incorporating the community's needs and values. I never thought we'd have the means to make it a reality, but because of this funding, our journey has just begun!” says Abitha Suthakaran as she describes how her capstone research project is developing into a real-world tool.
Abitha joined the Translational Research Program (TRP) in 2022 where she met fellow student Mouzhan Varshoueitabrizi. Abitha had worked as a mood disorder research assistant and Mouzhan at the Geneva Centre for Autism before joining the program and they bonded immediately. They joined with TRP peers Alena Moya, who has an Autistic brother, and Katie Boddison, a Social Worker and Behaviour Therapist. With these backgrounds and their own lived experiences, they all shared a passion for autism and mental health research which they explored in their 2nd year research project.
Around 1 in 50 children and youth have been officially diagnosed with autism in Canada. Autism is a neurodevelopmental condition characterized by difficulties with socialization, verbal and nonverbal communication, and repetitive or restricted behaviours and/or routines. Autistic individuals experience a greater prevalence of mental health conditions compared to the neurotypical population. This is problematic as experiencing co-occurring mental health conditions increases the possibility of worse long-term health outcomes and quality of life.
Despite an increased need for mental health support, Autistic adults in the Greater Toronto Area (GTA) report experiencing difficulties expressing their mental health needs to their chosen healthcare provider, including family physicians, psychologists, social workers, and psychiatrists. The team identified that there is a need to empower these adults to express their mental health needs to their chosen healthcare provider.
Together, they started investigating how they could improve the accessibility of mental health services for Autistic people as their capstone research project in the TRP and The Meaningfully Empowering the Neurodivergent Initiative, (MEND) was formed. Working with organisations and charities in the field, and importantly, Autistic people themselves, they developed a web toolkit designed to help affected adults in the Greater Toronto Area to access personalized mental health information, save useful resources, and connect with peers through an Autistic-moderated community forum. They developed the prototype during their time in the TRP which received very positive feedback. “Working together with the Autistic community was so important,” says Katie, “this group of people have been spoken for and over for far too long, so it was really important for us to do this work in a way that put forth and emphasized their voices and experiences.”
The project didn’t end when they completed their program and transitioned into new jobs or training. Abitha entered an annual CoLab program through ‘Press Start’, backed by Teachers Life Insurance and nearly 250 people applied. 50 applications were selected for the accelerator program which “shepherds aspiring Canadian social-preneurs and activists, ages 18 to 29, to problem-solve on some of Canada’s most pressing social issues through community, mentorship, collaboration, and seed-funding”. Abitha, representing MEND, was one of nine final projects that received funding to continue the project.
The $10,000 funding means the team can now launch the tool for the public. “Our next steps with this funding are to hire a web developer and content team to help us bring our prototype to life. We are also learning a lot about web development and the funding will help us sustain a secure web domain long term”, explains Abitha.
She was delighted to receive the funding and commented, “Getting funding was surreal. We knew we were doing meaningful work because we had heard that directly from the Autistic adults and researchers we collaborated with for our Capstone, but to be chosen from so many amazing proposals to receive the grant was an incredible honour. It just goes to show how big a gap there is when it comes to autism and mental health, and how many people would benefit from a platform like this".
