From Diagnosis to Dignity: Rethinking Support for People with FASD
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Dr. Melissa Dobson calls herself a reluctant “snowplow mom” – a term for people who actively engage with teachers and administrators at school to remove obstacles for their children.
All three of her adopted “awesome kiddos” are neurodivergent. When her middle child was a toddler, he was diagnosed with Fetal Alcohol Spectrum Disorder (FASD), a lifelong disability that affects the brains and bodies of people exposed to alcohol in the womb.
Dr. Dobson is also the associate chair in the Bachelor of Technology program at the Northern Alberta Institute of Technology and a member of the family advisory committee for the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD).
Dobson says she used to think that her middle child might never be able to write his name or even calm down enough to have a full conversation. Now he’s halfway through high school. All her kids are expected to graduate in the next few years.
“So now I feel like we’re hitting a place where we’re going to face the big problems,” says Dobson. “Bigger kids have bigger issues. We’re having mental health issues, and there are things that I can no longer pave the way for as they get older. So now it’s about figuring out how to create a community that can support them.”
Dobson isn’t alone in her worries. People with FASD and those with mental health problems are over-represented in unhoused populations, substance use disorder programs, and in Canada’s criminal justice system.
“FASD is so complex because it intersects with so many other areas, particularly the justice system,” says Kathy Unsworth, executive director of CanFASD, a national research network focused on FASD, who notes that the over-representation of FASD in the justice system, particularly among youth, is estimated to be 30 times the general population.
People with FASD aren’t the only segment of the population over-represented in Canada’s justice system. Approximately 73 per cent of men and 79 per cent of women who are federally incarcerated in Canada meet the criteria for one or more current mental disorders.
Expert adviser Howard Sapers is working with the Mental Health Commission of Canada and a national advisory group on a plan of action for the justice system. Photo: Dave Chan.
What’s being done
To address this issue, the Mental Health Commission of Canada is working with a number of organizations, including CanFASD, on a National Action Plan on Mental Health and Criminal Justice to support the mental health of people who interact with and work within the criminal justice system.
“The National Action Plan is just that, a plan, not something forced on people,” explains Howard Sapers, executive director of the Canadian Civil Liberties Association, and currently a member of the board of trustees of the Centre for Addiction and Mental Health, the CanFASD board of directors, a member of the Legal Aid Ontario prison law advisory committee, and expert adviser to the Commission.
“It’s not a federal strategy,” he continues. “It’s a call to action to Canada and all the provinces and territories and all the people that work in the systems we’re talking about, including support systems, criminal justice, and hospital-based health care.”
Systemic issues connected to the overrepresentation of people with mental disorders in the nation’s justice system are myriad, complex, and intersect with marginalized populations. Some of these, though, can be brought into focus through the lens of the experiences of some people living with FASD who often literally perceive the world differently than neurotypical folks. For example, in addition to issues with emotional regulation and time management, people with FASD often have memory gaps. Studies have shown that “confabulation”—the process of trying to fill those gaps—can make people with FASD particularly susceptible and vulnerable to making false confessions during interrogation.
One key piece on the path towards preventing wrongful convictions would be to ensure that everyone involved in Canada’s criminal justice system was “FASD-informed.” Recent reforms in Winnipeg serve as a good model for this, since the city has created dedicated courtrooms designed exclusively for people with FASD. That move could help prevent false confessions, in keeping with one of the main goals of the National Action Plan, which is to “divert people living with mental illness and substance use disorders from the criminal justice system whenever possible.”
Kathy Unsworth, executive director of the CanFASD Research Network, leads the national organization that studies and advocates for fetal alcohol spectrum disorder awareness.
A system without support
Unfortunately, FASD is also underdiagnosed or misdiagnosed for several reasons, including both stigma around alcohol use and the profound lack of resources for diagnostic clinics. Experts at CanFASD suggest a conservative estimate is that one in 25 Canadians is on the FASD spectrum, a number that’s significantly more prevalent than other developmental disabilities. Despite this, several provinces don’t even have a single clinic. Sapers says he’d like to see screening at police contact, court contact, and corrections contact, so that, eventually, a smaller proportion of people with this disorder would go through the justice system at all. Especially since it’s tough for jails to be therapeutic and, as the John Howard Society argues, FASD and the criminal justice system are a poor fit.
“The behaviours that are often associated with FASD, such as not following instructions well, are behaviours that can be very problematic in a jail,” says Sapers. “I’ve dealt with individuals living with FASD in a jail that get a lot of institutional disciplinary charges because they refused to follow a direct instruction. Often, though, they’re not refusing. They are just having trouble processing it.”
People with FASD may also lose access to their community health-care providers when they enter the corrections system. In some provinces, including Ontario, health care is administered by correctional services. That can disrupt and derail treatment protocols and interventions.
“We can improve outcomes, and we can improve brain functioning for people with FASD the same way we can improve anyone’s brain health,” says Dr. Jacqueline Pei, a professor in the faculty of education at the University of Alberta. “But we’ve also learned that it’s not a one-size-fits-all solution, and we’re not going to find a magic pill or a clear recipe for interventions that work.”
Pei notes, though, that there has been one important ingredient involved in the recipes for interventions, namely, co-creation. People living with FASD need to play an active role in creating the therapeutic intervention. There are no top-down solutions with FASD. And, speaking in broad strokes, correctional institutions tend to be places with a lot of top-down policies.
To address that, the National Action Plan – scheduled for release in 2026 – aims to support the mental health of justice-involved individuals at all junctures of the criminal justice and forensic mental health systems, including the people who work in the system. Finally, it’s important that continuity of care and support is continued post-release. Sapers says studies have shown that one of the riskiest times for people who’ve been in contact with the law is the month following their release, and there should be programs preparing people for release from “day one.”
Chris Fillion, a FASD advocate, says progress is promising, but there is room for more education and systemic change to incorporate awareness into everyday practice.
Making strides
That brings us right back to the importance of community. Winnipeg’s Chris Fillion, an advocate with lived experience of fetal alcohol spectrum disorder, says a lot of progress has been made towards making services FASD-informed in his city, but there’s still a long way to go.
“It does get frustrating for folks like me to go into hospitals or go into clinics or, say, people who are going to rehab, but when you get there, you find the people working there are not all FASD informed,” says Fillion. “It’s not woven into everyday practice.”
Fillion adds that people outside of the social service sector have a poor awareness of the basics around FASD, and, of course, stigma makes these problems much worse, since it discourages open dialogue.
Getting past stigma and rethinking supports for people living with FASD will involve a lot of heavy lifting. It starts with awareness, prevention, screening, and a recommitment to social services, says Melissa Dobson.
“I’m sure it costs far less to make sure that they have a house over their heads than to deal with encampments and homeless populations and criminal justice issues,” she says. “But I think if you could solve the world for a person who is severely impacted by FASD, you can solve the problems for the world,” Dobson adds. “It’s like building a ramp for the people who have an inability to climb stairs. I think it’s the same. If you could redesign classes, healthcare, and justice to fit those people, it would fit all the people.”
Further reading: Mental Health and Justice — A Call to Action.
Fact sheet: Common Mental Health Myths and Misconceptions.
Author: Christine Sismondo, PhD, is a historian and a regular contributor to the Toronto Star and other publications. She writes regularly about drug policy, intersectional feminism, and healthcare, and has received both a Canadian Online Publishing Award and a National Magazine Award.
Illustrator: Remie Geoffroi
