There are about 320 N.S. kids born with fetal alcohol spectrum disorder each year. They deserve more support
The rate of FASD in Canada is higher than autism, cerebral palsy and Down syndrome combined
"When I first moved here, it seemed like no one had even heard of FASD."
That's what Dr. Robert McInerney, a neuropsychologist from Halifax, told me as we talked about Fetal Alcohol Spectrum Disorder.
McInerney worked in several provinces before settling in Nova Scotia in 2008 — and his private practice is one of the only clinics in the province that diagnoses FASD.
The disorder results from alcohol use during pregnancy and can cause severe developmental delays in children. Beyond 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.
FASD in the classroom
I sought out Dr. McInerney after I came upon a rather agitated student in a colleague's classroom.
As the interaction unfolded, I noticed the child had some of the physical characteristics that can be present in those with FASD, which can include a thin upper lip, smaller eyes and the lack of a little groove between the nose and upper lip, known as a philtrum.
The incident left me reflecting upon how little I had heard about the condition since leaving Saskatchewan. There, FASD was a regular part of professional development for educational staff. As a teacher here in Nova Scotia, I can recall attending only one session on the subject in almost 25 years.
This comparative lack of training is alarming to me, if for no other reason than the condition's prevalence in our children. Conservative estimates have pegged the incidence of FASD births at about four per cent, according to Audrey McFarlane, executive director of the Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD).
A need for tailored supports
The condition is roughly 2.5 times more common than autism, 20 times more common than cerebral palsy and 30 times more common than Down syndrome, according to the most recent Canadian statistics on those conditions' prevalence.
That certainly calls into question our lack of services.
The IWK Health Centre does have some limited diagnostic capabilities but, with about 8,000 annual births in Nova Scotia, McFarlane's "conservative estimate" suggests that 320 of our children are born with FASD each year.
It also means that upwards of 40,000 Nova Scotians could currently be living with FASD, depending on the prevalence in earlier generations. And many of those people may be unaware they have the condition due to the lack of diagnostic capacity and other supports in this province.
To its credit, CanFASD has been trying. Since its inception in 2005, the organization has been encouraging provincial governments to sign on to its network. Participating provinces receive access to information and services aimed at parents, teachers and policymakers. It's covered by an annual fee which, for our province, would be less than $60,000.
Despite multiple requests, successive Nova Scotia governments haven't subscribed.
But New Brunswick has.
Our neighbour's approach
The New Brunswick FASD Center of Excellence offers services to more than 800 families — and its provincial program manager, Annette Cormier, says it accepts more than 100 new clients each year.
Given New Brunswick's population, however, there are likely many more people who may need support.
One of the difficulties in getting a diagnosis, or support, can be the stigma still attached to FASD — and the fact that people in education, medicine and society at large may still blame or shame parents for decisions made during pregnancy.
But that attitude not only ignores the complexities of addiction and the social determinants of health, but also the fact that nearly half of pregnancies in Canada are unplanned and may not be detected until well into the first trimester.
Mothers like Rochelle, who asked that I not use her last name in order to protect her adopted son's privacy, say that parents of FASD children often have to advocate for them in school.
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 his new school; how he might act out in class, demonstrate compulsive behaviour and might struggle to understand consequences.
"It wasn't his individual teachers," she said. "They were wonderful. But at every step, I had to push [for supports].
"How many kids have parents who will push?"
As a high school teacher here in Nova Scotia, I have heard very little dialogue about FASD. When I tried searching online for provincial supports, however, the results were slim: a two-page pamphlet produced in 2012 and a link to 811.
But with 320 children potentially entering our schools each year with FASD, it's beyond time we provide them, their families and their teachers with some semblance of support.
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