We submitted the following opinion piece to national media outlets last week, but due to competing election coverage, this essay was not able to be published. Our team at the Alliance felt it important to share, so we have placed it on our own site and hope that you can share across your own networks. 

Dr. Deepa Singal is the Scientific Director at the Autism Alliance of Canada and an Adjunct Assistant Professor in Pediatrics at the University of Alberta and Scientist at the Manitoba Centre for Health Policy. She is an award-winning researcher and policy leader working to advance equity and evidence-based supports for Autistic people in Canada.

As headlines in the United States reignite polarized conversations about the rising prevalence of autism, Canadians have an opportunity—and a responsibility—to take a more thoughtful path forward. We must counter the fear and controversy with facts and care. 

As an autism researcher, and expert in working with  anonymized, population-level administrative data to support autistic people and their families, I can say unequivocally: the numbers matter. But how we use them matters even more.

In Canada, we lack consistent national data on how many Autistic people live here, how their needs change over time, and where they face the greatest barriers to care, education, and inclusion. Without this information, we’re left guessing—and when we guess, it’s the most marginalized who fall through the cracks.

Here’s what we do know: autism is a complex and diverse neurodevelopmental condition, with a strong genetic link. It affects how people communicate, learn, and experience the world. No two people are the same and support needs vary widely — from those who are non-speaking and require lifelong care, to those who live independently and thrive with the right supports in place. Many autistic people also have co-occurring conditions such as ADHD, anxiety, or intellectual disability.

This isn’t new. What’s changing is our ability to identify and support people who were overlooked in the past: girls, gender-diverse people, and racialized communities. At the same time, the clinical definition of autism has broadened significantly over the last decade, better reflecting the full spectrum of neurodiverse experiences.  That’s why we’re seeing the numbers rise. 

In Canada, a 2019 Public Health Agency of Canada report estimated that  1 in 50 children are diagnosed with autism. That is likely an underrepresentation, as the data did not include all provinces and had methodological limitations. Our true prevalence is likely closer to recent estimates from the U.S. Centers for Disease Control and Prevention (CDC), which now report autism prevalence at 1 in 31 children. Some Canadian provinces already report higher numbers – for example,the Ministry of Children and Family Development in  British Columbia reports that 1 in 25 children are receiving services for autism support.

These rising numbers are not a crisis – they reflect real progress in screening, awareness, and inclusion.

Canada’s National Autism Strategy, launched in 2024, is a critical opportunity to build on this progress. One of the Strategy’s five priority areas focuses on data collection, public health surveillance, and research. This isn’t just a technical detail—it’s the foundation on which good policy is built. Accurate, representative data can guide the allocation of resources, inform the design of programs, and reveal patterns of inequity that might otherwise go unseen.

Critically, robust data is one of our strongest tools to combat misinformation. In an era where harmful myths about autism persist—often rooted in long-debunked science—credible data grounds public understanding in truth, not rhetoric. 

Autism data  must be collected ethically and used responsibly—not revive false debates or fuel narratives of fear and blame. Misusing data undermines public trust and distracts from the real work of building inclusive systems.

Further, data must not be about counting people to control them—it’s about ensuring no one is invisible; helping to identify unmet needs so that governments, communities, and service providers can respond with  accuracy, and impact.

Data also allows us to recognize the diversity within the Autistic community—across race, gender, income, age, language, geography, and support needs. A prevalence rate without that nuance is just a headline. It won’t help a parent navigate waitlists, or a young adult find meaningful employment, or an Indigenous family access culturally appropriate care.

Canada is well-positioned to lead in this space. Our universal healthcare systems, robust administrative data infrastructure, and strong research networks give us the tools to develop a rigorous, rights-based approach to autism data.

But leadership means being intentional. It means co-designing data strategies with Autistic people, families, and communities—not simply for them. It means safeguarding privacy, promoting transparency, and committing to action based on what the data tells us.

At its best, data can help us build systems that see people fully, plan better, and respond more humanely. At its worst, it can flatten complex lives into simple statistics, used to justify inaction, or—more dangerously—give credibility to conspiracy theories and long-debunked science.

Prevalence rates are not a crisis; they are a call to action. If we want a Canada where Autistic people can live full, connected, and meaningful lives, we must start by knowing who we’re serving—and act on that knowledge with fulsome policies, neuro affirming health care and education, and inclusive practices, not fear. That’s why how we use autism data matters just as much as collecting it.

It must serve progress, not panic; compassion, not controversy; truth, not tactics.