Holland Bloorview is Canada’s largest pediatric rehabilitation hospital, and a place where, each year, more than 8,700 children and teens might call their home away from home.

It’s also a place where research teams at the Bloorview Research Institute’s Autism Research Centre (ARC) and the Autism Services clinical team  are collaborating in close partnership with families and autistic advocates to co-create programs to meet the highly individualized needs of autistic children and their families.

Autism diagnosis journey

Holland Bloorview is the diagnostic hub for Toronto-area families who receive a referral from their community physician for an assessment. Below are some of the ways in which we are integrating our strategic commitment to provide care that’s agile into the autism diagnostic journey with clients and families:

• consultation with an allied health professional for families whose children are under four years of age to best understand their needs and direct them to resources they can access right away;
• monthly online discussion groups facilitated by family partners from the Family as Faculty Training Program as a platform to support one another and to share experiences as they wait for their assessment; and
• revamped clinical pathways, co designed with family leaders and clinicians, to provide a tailored approach to assessing children and teens, taking into consideration their clinical, medical and psychosocial complexities.

“I’m really proud of the new resources, supports and individualized pathways that have been co-developed by Holland Bloorview clinicians and family leaders, and confident that we’ve made meaningful progress to improve the autism assessment journey of children, teens and families,” says Adrienne Zarem, a family leader and member of the hospital’s autism pathways working group.

“Families have been instrumental in revamping our pathways at Holland Bloorview,” says Josh Scroggy, clinical operations manager who oversees the Autism Services program. “We wouldn’t be where we are if families were not engaged throughout this process.”

Care transformed by research

At Holland Bloorview, researchers and clinicians are working together to transform care through research, bringing research findings from the lab and into the clinic. One example is the Social ABCs program, a parent-mediated, evidence-based early intervention program to help children with social communication challenges interact socially. The program was co-developed by Dr. Jessica Brian, senior clinician scientist at ARC and psychologist with Autism Services, and Professor Emerita Susan Bryson of Dalhousie University.

To address the critical need to build more capacity in the community and to support training and education in autism, researchers, clinicians and autistic advocates have been working together on a program called ECHO (Extension for Community Healthcare Outcomes) Ontario Autism. Funded by the Ontario government, the program provides training for a range of clinicians in the community such as physicians, nurse practitioners and psychologists, enabling them to build their skills in the areas of diagnosis and ongoing care.

“It is incredible to see over the course of the sessions of ECHO, we see more confidence and broader knowledge in the clinicians who attend,” says Maddy Dever, a member of the ECHO team. “As an autistic adult and parent, it is so appreciated to be able to offer my lived experience alongside the rich teachings of the other professional members of the ECHO expert hub.”

Transformative, equity driven research

Top scientists at the Bloorview Research Institute’s Autism Research Centre are discovering novel ways to enable autistic individuals to live their best lives, from childhood into their adult years. The centre brings together a team of scientists, researchers, research trainees and other professionals dedicated to improving outcomes and quality of life for children with autism and related neurodevelopmental conditions and their families. In addition, Holland Bloorview recently partnered with the Autism Sharing Initiative, a global initiative aimed at accelerating breakthrough discoveries in autism.

Below are a few of the research highlights from ARC:

• CIHR-funded study to explore  how artificial intelligence can be used to identify medication that meets the unique needs of autistic children;
• New Transforming Health with Integrated Care grant to support ECHO autism programs across Canada; and a
• CIHR-funded study to gain a better understanding of autistic adults by exploring ageing and brain function.

“Our research priorities at ARC are informed by the voices of children, youth, and families to ensure that they are valued and meaningful. Through research-clinical collaboration, Holland Bloorview is moving the needle on bringing evidence-based practice to the forefront of our clinical work," says Dr. Brian, co-lead of the Autism Research Centre and a psychologist and senior clinician scientist. “Traditionally, the bridge from research to clinical care is very wide, but our teams are working together to make sure that research innovations are accessible to the children and families in a timely and meaningful way.”

Building a learning health system

To enable the most healthy and meaningful futures for children with disabilities and neurodevelopmental differences including autism, Holland Bloorview is working towards building a learning health system. In a learning health system, we partner with clinicians and clients and families to use data, including clinical data, research data and experiential knowledge, to address pressing clinical needs and optimize the care and services. Clinical and research teams are adopting and evolving learning health system principles to provide individualized, evidence-informed and high-quality care to ensure the best possible outcomes and quality of life for autistic children and youth and their families.