Autism is a complex and diverse neurodevelopmental condition that is diagnosed in one in 50 children and youth in Canada. It affects how people communicate, learn and experience their world. No two individuals are alike. 

The wait times, however, for a diagnostic assessment by an autism specialist are often over a year for families. These wait times are delaying access to essential services that have the potential to impact function and quality of life for children and their families. 

To reduce these long wait times and ensure families can access assessments closer to home, Holland Bloorview Kids Rehabilitation Hospital is scaling up capacity nationwide.

A team of scientists and clinicians led by Dr. Melanie Penner, a developmental pediatrician and senior clinician scientist at the hospital’s Bloorview Research Institute, is engaging nearly 600 community-based clinicians across Canada each year to improve early diagnosis, support the development of integrated care models and build stronger connections – in close partnership with parents of neurodivergent children and autistic advocates. 

“We know that long wait times for autism diagnoses can cause children to miss out on opportunities for therapy. We also know that after a diagnosis, it’s hard for kids to receive the ongoing care they need,”  says Dr. Penner. “Through our ECHO Autism and ECHO AuDIO initiatives, we can democratize knowledge about autism diagnosis and ongoing care so that community-based physicians, nurse practitioners and other professionals across Canada can provide care that is tailored to the families living in their local communities.”

Using an inclusive teaching and learning approach, Dr. Penner co-developed the ECHO Ontario Autism hub with the vision of providing community practitioners the knowledge and support they need to diagnose autism and provide ongoing care for autistic children and youth within their practice so that more families can receive timely care, closer to home. 

Since 2018, the multidisciplinary team comprised of parents of neurodivergent children, autistic individuals and clinicians have supported the online education program funded by the province for over 500 community physicians, nurse practitioners, psychologists and physician assistants. Physicians and nurse practitioners, for example, can sign up for virtual sessions beginning each September. The sessions cover a range of topics, including understanding autism, the diagnostic process, promoting autism acceptance, school supports and strategies parents can use to support their child’s social communication skills while waiting for an assessment.

Maddy Dever, one of the ECHO Autism Hub team members and an autistic advocate and parent advisor, is passionate about their work with the hub. As a parent to four autistic children, they are a strong advocate for the inclusion and acceptance of autistic individuals.

“I’m grateful to work alongside health-care professionals who value my lived experience. Autism acceptance starts when providers truly listen to autistics and caregivers—and through ECHO’s ‘all teach, all learn’ model we all turn that listening into co-design, building pediatric care that centers every child.”

Building national capacity through ECHO AuDIO

To scale up capacity for autism assessments and ongoing care across Canada, Dr. Penner and her research team are conducting a national study called ECHO AuDIO (Extension for Community Healthcare Outcomes Autism Diagnosis and Integrated Care Opportunities). This study is asking pediatricians coast-to-coast-to-coast about what they think providing good autism care in their communities looks like. The study is also reaching out to people who traditionally haven’t been asked what they think about autism care, including autistic people and people from equity-deserving groups.

Munira Khilji, a community advisor with ECHO AuDIO and parent of neurodivergent teenagers, believes that her family’s lived experiences can help to lift the voices of other culturally diverse families with autistic children. 

“A big part of my role is to ensure this study meets the needs of equity-deserving groups. We want to ensure that we are advocating for culturally responsive care in communities.”

Dr. Penner and her team are now developing toolkits to support pediatricians provide the best possible care for even more families in their own communities.

 “I’m excited to see how our initiatives can scale up to support more autistic children and youth with the right care, when and where they need it.”