A few months ago, some standard high school paperwork led me to wander into a colleague’s classroom. I knew immediately that my timing was terrible because one of the students was, shall we say, in a fairly heightened state of agitation.
What made the moment so memorable for me wasn’t how the child was acting, (at least not in this day and age) but rather how they looked. Small features, flattened upper lip just below the nose, eyes somehow ‘off’, almost as if they were too far apart. The moment I saw the child’s face, I recalled a phrase which had not entered into my vocabulary in quite some time.
The child, I surmised, had Fetal Alcohol Syndrome.
There was no official diagnosis on file, so I have no idea if my on-the-spot assessment was accurate. What struck me, however, was that I had not even thought about Fetal Alcohol Syndrome (FAS) since leaving my first teaching job in Northern Saskatchewan more than twenty-five years previous. In that province, FAS was a large part of the professional development training offered to all school staff, and as I watched the interaction unfold in front of me, I began to recall what I knew.
FAS was, as I remembered, a condition that resulted from alcohol use during pregnancy. It could cause serious developmental delays for the child, and was often associated with some very distinct facial features*. Children with the condition were known to exhibit poor impulse control, and often demonstrated little understanding of cause and effect. There was also no precise measure of how much (or how little) alcohol could result in the onset of FAS.
The fact that I had needed to reach back across two decades and four provinces to access what little I knew about the subject gave me some pause. Why, I wondered, had Fetal Alcohol Syndrome seemingly disappeared from the educational conversation?
My search for that answer took me on a very informative journey that started with Audrey McFarlane, executive director of the Canada Fetal Alcohol Spectrum Disorder (CFASD) Research Network, (CanFASD) who patiently pointed out that FAS was an outdated acronym. The condition’s name now included the word “spectrum” to indicate a much wider scope of symptoms and severity.
According to McFarlane, FASD had first begun to receive public note in 1993 when researchers out of Washington State University established the FAS diagnosis and prevention network. Information and interest spread from there, driven in part by concerned First Nations parents who were seeing adverse effects of alcohol consumption within their communities. This early activism had the unfortunate side effect of leading many to erroneously view FASD as a “First Nations issue”; particularly in the early days. That perception could not be further from the truth.
“FASD is not a ‘poor person’s issue” McFarlane explained, “It’s not a ‘First Nations’ issue. It’s a major societal issue that is simply not getting enough attention, particularly in Nova Scotia”.
McFarlane directed me towards research papers which place conservative estimates for the incidence of FASD at four percent of the population. That makes it “one of the leading known causes of developmental disability in the western world.”
For further context, McFarlane explained that children are 2.5 times more likely to be born with FASD than they are with Autism and a whooping 28 times more likely to have FASD than they are to have Down Syndrome. If you add Cerebral Palsy and Tourette’s to the equation, the likelihood of a child having FASD is higher than all four of those conditions combined.
I asked McFarlane why she thought there was such a lack of awareness of these staggering numbers here in Nova Scotia. She explained that there was “a huge disparity in both programs and services” as one travels from West to East in Canada.
“The further East you go, the less information and support you see.”
It is not for lack of trying. In fact, since its inception of 2005, CanFASD has lobbied governments right across Canada to join the network. For a yearly membership fee, provinces receive access to a wide array of training modules and resources for everyone from parents to teachers to professionals in the legal system. The cost for our province to sign up, determined by population, would be about $60,000.00 per year.
For whatever reason, successive Nova Scotia governments have shown little interest in joining, a stance McFarlane was at a loss to explain.
“The research is very clear. People with FASD are much more prone to problems like substance abuse and crime. FASD is permanent, but we can change outcomes for children with appropriate diagnosis and supports.”
One “pocket in the wilderness” that is offering what McFarlane considers “world class services” is right on our doorstep. She holds New Brunswick up as a shining example of what can be accomplished with the right amount of political will. There, a dedicated institution exists to diagnose children and support families with FASD.
Nova Scotians have a long standing reputation as heavy drinkers. For better or worse, we like our booze. The current pandemic has certainly done nothing to curb that enthusiasm. And although the predicted COVID baby boom has not materialized here in Canada, we have seen a tragic spike in the incidence of intimate partner violence. These conditions are the perfect petri dish for an increase in FASD numbers.
Annually, we see about 8000 births in our province. At 4%, 320 children enter our school system each September with FASD; the majority without a diagnosis. An increase of even one percent adds eighty children to that equation, and we currently have little to no way of supporting them.
This is not just a provincial shame, folks. This is a provincial travesty.
For the next part in this series, I decided to reach out to experts in New Brunswick to see what I could learn about their success in establishing their “world class” facility for FASD families.
*Author’s note: Turns out I was wrong on this one. What were once considered the tell-tale facial features of FASD children only occur in about 10% of cases.