Rob More remembers sitting in on a meeting where two parents were telling the school principal that their children with Fetal Alcohol Spectrum Disorder (FASD) needed more support. The school psychologist chimed in to inform them that FASD was not a recognized disability.
For More, a special needs educator and parent advocate, the story encapsulates the challenges faced by families and youth with FASD.
“When you have a situation where parents are trying to convince a principal that a medical professional is wrong and they are right – well, that’s a really hard argument to make,” he says, explaining that at the time FASD didn’t even have a medical code.
For people living with a heavily stigmatized and often invisible disability like FASD, counting the number of people in a population affected by the condition, known as prevalence, can serve as a powerful tool to change policy and advocate for supports. Until April 2018, all that Canadians concerned about the issue had to go on was a rough estimate that recently proved to be inaccurate.
This spring, a study led by Dr. Svetlana Popova, senior scientist at the Centre of Addiction and Mental Health’s Institute for Mental Health Policy Research suggested that between 2-3 percent of schoolchildren aged 7-9 in the Greater Toronto Area have FASD.
“[It] was urgently needed,” Dr. Popova told an interviewer for CBC’s Metro Morning. “The prevalence of FASD in the general population was unknown – we didn’t know how many people with FASD exist in Canada.”
That figure has been pegged at 1 million, based on an extrapolation from data Popova and colleagues collected in 40 elementary schools.
“This study is eye-popping, and the effects of FASD on the Canadian landscape can’t be ignored any more,” says More, who has three adopted children living with the neurodisability. “We finally have empirical data — not just our opinion or websites, but empirical data we can turn to and refute any misinformation that exists in terms of FASD.”
New figures for Autism invite comparison
The previous month, first-in-Canada prevalence figures for autism spectrum disorder (ASD) were announced by the Public Health Agency in Canada (PHAC): 1:66 Canadian youth are currently living with autism. Provincial governments in Newfoundland, Nova Scotia, Prince Edward Island, New Brunswick, Quebec, British Columbia and the Yukon partnered with the federal government, researchers, families and advocacy groups to produce the report, which was more than a decade in the making.
“People are still surprised that by 1.5 percent of children have autism – that figure has received quite a bit of attention,” says Allison Pooley, executive director of the Asante Centre, a British Columbia-based organization that offers assessment and diagnostic services, family and community support, as well as education and training, for FASD, autism and other neurodevelopmental disabilities.
“Most people working in the field of FASD are not surprised by the fact that it’s twice as common as autism, and crosses all socio-economic and cultural boundaries. But this information is new to the average person.”
The FASD study debunks the stereotypes reflected in public opinion, according to James Reynolds, KBHN’s FASD project lead (Queen’s University). “These were kids living with their biological parents in affluent parts of the GTA who have been identified as having FASD,” says Dr. Reynolds. “Now, sitting in the Ontario legislature I’m able to look MPPs in the eye and tell them this not something that’s only happening up in the north in rural communities. This is something that’s happening two kilometres from here.”
“Now in all of our advocacy efforts – whenever we meet with decision makers – we have science behind us proving the scope of the problem, therefore what strategies they need to start putting in place to mitigate the long-term impact and cost associated with failure to identify and support these kids,” says Reynolds. “Collectively, our voice is starting to get louder and louder.”
Deborah Pugh, executive director of ACT-Autism Community Training is a member of the PHAC advisory committee, and has been involved in the autism prevalence initiative since 2011. She describes the recent ASD report as one of the most in-depth works of its kind in the world. Canada’s surveillance system captured 40 per cent of the population between the ages of five and 17 who had received an official diagnosis.
“It’s really important to have Canadian data that’s comprehensive, and that scientists and families can look at and be assured that this gives a very strong, clear picture of our current situation and how we have to plan for the future,” says Pugh.
“The most important thing is what are we going to do with these numbers: what are the next steps, how are policymakers going to inform their decision making based on this data, and will we have responsiveness on the parts of the provincial or federal governments?”
Pugh credits the ASD community across the country for their determination to push for an official government study of this magnitude, and hopes similar reports will be done for other neurodisabilities in the near future.
“It’s important to note that this is not supposed to be just about ASD,” she adds. “We hope this report is a precedent on which the other conditions will be examined, particularly FASD but also other neurological conditions. Many of them overlap, and it’s only when we get a clear picture can we fully understand what’s going on.”
By Katelyn Verstraten and Bethany Becker¹