“No one sets out to intentionally harm their children.”
Those words were spoken to me by Dr. Robert McInerney, a neuropsychologist from Halifax. McInerney worked in several provinces before settling in Nova Scotia in 2008, and his clinic offers a variety of standard services, including therapy, teaching and assessment. It is, however, unique in one very important way: It is one of the only clinics in the province providing diagnosis of Fetal Alcohol Spectrum Disorder (FASD).
FASD is a condition that results from alcohol use during pregnancy and that can cause severe developmental delays in children. Beyond simple learning difficulties, those with FASD can exhibit poor impulse control, little understanding of cause and effect, and often struggle with regulating their emotions. To date, there is no precise measure of how much (or how little) alcohol consumption results in the onset of FASD.
I sought out Dr. McInerney because of an in-school incident I witnessed a few months back when I happened into a colleague’s classroom. I walked in just as a student was, shall we say, having a bit of an outburst. As the interaction unfolded, I was stricken by the child’s facial features: thin upper lip; eyes somehow “off,” almost as if too far apart, missing that little groove (officially called the philtrum) under their nose. Although appearing in less than 10 per cent of cases, these features are classic signs of possible FASD.
According to McInerney, things have improved somewhat for patients over time. For example, the IWK does now have some limited diagnostic capabilities for FASD. There is, however, no dedicated clinic in the province, a reality parents like Rochelle find “incredibly frustrating.”
“You hear it. You see it. But you don’t know it until you live it”
Rochelle, who asked that I not use her last name, has an adopted son with FASD. She considers herself fortunate to have been able to advocate for him throughout his school career.
A public sector worker, she has moved several times in the last few years within the province for work. With each move, she had to explain her son’s condition to staff at his new school — how he might act out in class, demonstrate compulsive behaviour, and might not understand the concept of “or else” as a disciplinary strategy.
“It wasn’t his individual teachers,” she explained, “They were wonderful. But at every step, I had to push (for supports). How many kids have parents who will push?”
“How many?” is an important question.
According to Audrey McFarlane, executive director of the Canada Fetal Alcohol Spectrum Disorder (CFASD) Research Network (CanFASD), conservative estimates have pegged the incidence of FASD births at about four per cent. The condition is 2.5 times more common than autism, 19 times more common than cerebral palsy, and 28 times more common than Down Syndrome. Adding Tourette’s Syndrome into the equation, a child is more likely to have FASD than all the others combined.
That prevalence draws attention to our lack of services. With approximately 8,000 annual births, that “conservative estimate” means 320 of our children are born with the condition every year, and that upwards of 40,000 Nova Scotians are currently living with FASD — many unaware of the condition, and most unable to access any information or supports.
To its credit, CanFASD has been trying. Since its inception in 2005, the organization has been encouraging provincial governments to sign on to their network. Member provinces receive access to a wide array of information and services for parents, teachers and lawmakers, all covered by an annual fee which, for our province, would be less than $60,000 a year.
Despite multiple requests, successive Nova Scotia governments have simply refused to sign on.
New Brunswick leads the way
The same is not true of New Brunswick. There the New Brunswick FASD Centre of Excellence offers an array of services to over 800 families. Provincial program manager Annette Cormier says the centre receives over 100 new clients each year. Based on that province’s population, however, that number should be at least double.
One of the roadblocks to people seeking help is the stigma attached to the condition, something the centre has worked hard to erase.
“There are many cases,” Ms. Cormier explained, “where either the mother was unaware of the severity of the risks associated with alcohol and pregnancy, or where they simply did not know they were pregnant.”
Personal testimony
One such story belongs to Nadia Mallet, who tells her story on the NBFASD website. Nadia and her partner struggled for years trying to solve their son’s behavioural issues, which included violent incidents and an inability to follow rules. They tried many interventions, including psychologists and medication — to no avail. It wasn’t until their child was 13 that a psychiatrist suggested FASD.
Nadia freely admits to going out for drinks exactly twice while pregnant; once at eight weeks and once at 10. Unfortunately, she did not discover the pregnancy until Week 11, and although she did not drink again, FASD had already developed in her child.
Stories like Nadia’s are commonplace for Dr. McInerney, who currently has a 12-month wait list.
“The fetus is most vulnerable during the first six to eight weeks … during that time, alcohol exposure can be incredibly harmful. Many (mothers) don’t even know they are pregnant during that time.”
The coming wave
COVID-19 has done little to help. According to a study out of the University of New Brunswick, the use of alcohol in women of child-bearing years has increased during the lockdown. Dr. McInerney was clear on the implications.
“We don’t just think FASD rates will rise because of COVID. Rather, we are expecting it.”
As a teacher here in Nova Scotia, I have heard very little dialogue about FASD. That could be simply a matter of what I teach. However, a Google search of FASD New Brunswick leads one to the NBFASD centre. A similar search in Newfoundland reveals a provincial support network.
Searching “Nova Scotia FASD” provides a two-page pamphlet produced in 2012 and a link to 811.
Rochelle spoke candidly with me about her reality. Most parents have hopes and dreams for their children — for a future, for a career, for them to be happy. Although her unconditional love for her son came across very clearly, FASD comes with harsh realities. High rates of substance abuse, incarceration and suicide among the FASD population are never far from her mind.
“Once you have an FASD child, you will spend their whole life protecting them.”
When it comes to providing that protection, parents, in Nova Scotia at least, are essentially on their own.
September 2025 will see Nova Scotia classrooms welcoming what could be a record number of FASD students born during the pandemic.
We have exactly that long to prepare our system for what’s to come.
Grant Frost is an educational commentator who has been teaching for 25 years. He's also past president of the NSTU Halifax County local. More of his commentary can be found at frostededucation.com.
