CEO blog: Shedding a light on autism

Payton, a client, with Dr. Evdokia Anagnostou, co-lead of the Autism Research Centre and senior clinician scientist in the Bloorview Research Institute.

Awareness days are important opportunities to draw attention and build knowledge about a particular group of people. By pausing on a particular day we can create a window for increased opportunities to learn, teach, celebrate, and build greater inclusion and opportunity where there is stigma and inequality.

In the lead up to this year’s World Autism Awareness Day on April 2, there was a social media storm on an issue that I thought had been put to bed once and for all. What created the attention were actor Robert De Niro and the Tribeca Film Festival’s decision first to show, and then pull, a discredited scientist’s film showing what is now known to be a thoroughly debunked link between vaccination and autism.

Parents of children who are on the autism spectrum (like Mr. De Niro) are justified in wanting to use whatever platforms are available to them to promote social inclusion and equality, as well as to enable rich dialogue about the causes of and interventions for autism. People who have autism and their families need to be listened to and be empowered to take the lead in identifying the key questions and defining for themselves the identities they wish to shape.

However, they need help to find credible information. The most important response to misinformation and the sometimes dangerous actions it spawns is high quality science. Services and treatments based on the best evidence will yield results for the about one in 68 children who have autism and that’s why research is one of the most important ways to impact the lives of kids with autism and their families.

This month and beyond, I want to invite you to celebrate kids who have autism and their families in your communities. We know and our guided by the experiences of many such families at Holland Bloorview and we believe the greatest impact we can have is through research, specifically the ground-breaking work of the scientists and clinicians affiliated with the Autism Research Centre under the leadership of Dr. Evdokia Anagnostou and Dr. Jessica Brian. Whether looking at social inclusion, early intervention, drug therapies or technology to build on the strengths of and enhance the lived experience of kids with autism (and other neurodevelopmental disorders), research is making a difference now and is the key to making a difference in the future.

Dr. Melanie Penner, a developmental pediatrician and scientist in our Autism Research Centre, recently shared her passion for making a difference in the lives of kids with autism and their families in a video by the Ontario Medical Association.

At Holland Bloorview, we want to continue to accelerate knowledge in this area, which is why we are working to build support for the creation of the Dr. Stuart D. Sims Chair in Autism. This research will aim to improve quality of life for kids with autism and their families. To find out more or how you can help click here.

Like other awareness days, World Autism Awareness Day is an important opportunity to celebrate, awareness-raise and fundraise for all different kinds of organizations. I hope it encourages everyone to continue to teach and learn throughout the whole year!