Title: Canadian Autistic Individuals Advocate for Early Diagnoses

TORONTO - Moira Robertson received her autism diagnosis at 23, missing out on crucial government-funded support during her formative years. Now 25, she recalls a painful childhood filled with bullying and misunderstanding. In Bruce County, Ontario, where she grew up, local health providers were unable to diagnose her, leading to a five-year wait to see a specialist outside her area.

Robertson believes the focus should shift from U.S. government rhetoric, which has emphasized finding a cause for autism and unproven treatments, to improving the Canadian healthcare system. "It isn’t helpful, and could be harmful," she said. Instead, she and other advocates argue for increased resources to ensure timely diagnoses, which can lead to essential financial, mental health, and educational support.

During her undergraduate studies, Robertson struggled without assistive-listening technology and had to fight for exam accommodations. A 2018 survey by the Canadian Paediatric Society indicated that the wait time for an autism diagnosis could be as long as two years, with adults facing an average wait of 2.5 years.

Eventually, Robertson's family opted to pay out of pocket for a private psychologist in Guelph, over an hour away. "Once I finally got the actual piece of paper that is like – yes, she is autistic – boy was that so much easier," she said. This diagnosis allowed her to access a disability tax credit and receive necessary academic accommodations. However, she feels she missed out on vital support and self-understanding during her youth.

Siyu Chen, who was diagnosed at 17, experienced delays common among women from ethnic minorities. She believes that her doctors in Vancouver did not recognize how autism can manifest differently in children of diverse backgrounds. "If my parents were able to maybe describe how I was as a child a little bit better, maybe the physicians could have a better picture of who I was as a person and that could help towards the diagnosis," Chen said, noting that her parents' limited English proficiency may have contributed to the delay.

Research from the University of British Columbia indicates that diagnostic criteria have historically been more effective at identifying autism in boys, leading to disparities in diagnosis for girls and individuals from various racial and ethnic backgrounds. A 2023 U.S. study found that girls are diagnosed up to two years later than boys, depending on their background.

Chen serves as the interim vice chair of the National Autism Network, which advises the Canadian government on implementing its Autism Strategy. This strategy prioritizes timely diagnosis and has received over $6.3 million in funding. Chen acknowledges the investment as a positive step but emphasizes the need for action. "The strategy is one of those things where it’s a milestone – yes – but those are just words," she said.

Maddy Dever, an autistic parent of four children, shared her family's varied experiences with the diagnosis process, ranging from less than a month with private insurance to over six months in the public system. She advocates for training more healthcare providers to diagnose autism effectively. Dever is involved with a program called Extension for Community Healthcare Outcomes (ECHO), which educates primary care providers on autism diagnosis.

A 2023 study from Holland Bloorview Kids Rehabilitation Hospital noted that the increasing prevalence of autism, now affecting about two percent of Canadian children and youth, has exacerbated wait times, which have likely increased since the COVID-19 pandemic. The study found that general pediatricians can accurately diagnose autism, especially when they feel confident in their assessments.

Robertson, who also works with ECHO Ontario Autism, reflected on how her life might have changed if she had received a diagnosis as a child. She recalled her early struggles, saying, "He probably would have figured it out like the moment I came into the doctor’s office. I would have had a diagnosis then and I would have gone through all of elementary and high school and post-secondary and life knowing from the start, and it would have completely changed my life trajectory."