A few months ago, I had a chance encounter with a student who presented many of the outwards signs of having Fetal Alcohol Spectrum Disorder, or FASD. This condition occurs when a fetus is exposed to alcohol, and is associated with many developmental delays including learning difficulties, challenges with regulating emotions, and an inability to decode the concept of rewards and punishments.
None of these are particularly conducive to a positive school experience, but it struck me that I had not heard much in the way of discussion about the condition since leaving Saskatchewan twenty-five years previous. I found myself wondering why, at least in my experience, the educational airways in Nova Scotia were silent on the subject of FASD.
The search for answers lead me first to the Canada FASD Research Network, (CanFASD) then to the New Brunswick Fetal Alcohol Spectrum Disorder Center of Excellence, where I discovered a great many things about how other jurisdictions are providing services for FASD families. BC, Alberta, Manitoba, Saskatchewan, New Brunswick, and Canada’s three Northern territories are all members of the CanFASD network and provide a wide array of services. These include everything from family support groups to dedicated diagnostic clinics. Although not a member of CanFASD, Newfoundland is working diligently to expand its supports.
Considering that conservative estimates have incidence of FASD being far more common than Autism and Down Syndrome combined, Nova Scotia’s conspicuous absence of service is shocking, to say the least. It is a reality that professionals like Dr. Robert McInerney live with every day.
Dr. McInerney is a neuropsychologist who first moved to Nova Scotia in 2008 after working in several western provinces. When he first arrived, it wasn’t just the lack of services that he found surprising, but rather the overall lack of awareness.
“When I first moved here, it seemed like no one had even heard of FASD.”
Dr. McInerney’s clinic is one of the only places in Nova Scotia actively diagnosing FASD, and since first opening its doors in 2009, it has experienced a steady growth in referrals. Today, those referrals make up a full eighty percent of McInerney’s clinical work, and he estimates he completes 40 to 50 FASD assessments each year. Even with that effort, he has a 12 month wait list.
That number of assessments, although impressive, is statistically a drop in the bucket. With approximately 8000 annual births every, Nova Scotia should be diagnosing over three hundred cases every year.
This lack of services is something that parents like Rochelle, (who did not wish me to use her last name), knows all too well. Their adopted son received his diagnosis of FASD from McInerney, but only after several years of trying to solve his behavioural issues.
“We tried for many years to find out what was out there. But there is nothing here in Nova Scotia”.
The IWK does have some limited diagnostic capacity, but navigating that particular web of services can be exceptionally challenging. In fact, Rochelle called the IWK prior to our interview to see if things had improved since her son received his diagnosis. She described being transferred across multiple departments before finally giving up in frustration.
Now, in defense of the IWK, I’m not sure judging their capacity to offer assistance on the issue of FASD in the midst of a global pandemic is entirely fair. As well, the lack of a dedicated FASD clinic would make the confusion understandable. But that is rather the point. Without a dedicated clinic, the 40,000 or so Nova Scotian families currently affected by FASD are, essentially, on their own.
There have been, over the years, a number of attempts to rectify this situation. As recently as 2013, an organization called the Nova Scotia FASD Intergovernmental Exchange was working on raising awareness of the condition. They produced an informational pamphlet and a short video, and seemed to be certainly heading in the right direction. Since that time, however, efforts have seemingly stalled.
The fact that there have been challenges in getting a provincial strategy off the ground came as no surprise to Allan Mountford, a former FASD Support Specialist who, like McInerney, recently settled in Nova Scotia. Mountford hails from Ontario, and remains part of an organization called the Fetal Alcohol Spectrum Disorder Ontario Network of Expertise (FASD ONE). The organization is currently working with the provincial government on legislation that would make FASD training mandatory for all educators, including Early Childhood Educators in that province.
Getting to this point was certainly no small task. Mountford can trace efforts to establish a provincial network all the way back to 2000, when he brokered a meeting that included parents, medical professionals, bureaucrats and advocates. Although the meeting seemed a positive sign, it resulted in no action being taken by the province.
Over the years, and through considerable effort, FASD ONE worked with numerous politicians, (including former Ontario Premier Kathleen Wynne) and through various channels to advance their cause, but the pace was maddeningly slow. Even now, there is no guarantee that the proposed legislation will make it through the legislature. When asked to assess the state of FASD awareness and, indeed, advocacy, here in Nova Scotia, Mountford was blunt.
“I haven’t been here long, but even looking at Nova Scotia from Ontario, I would say efforts are at least a decade behind.”
I have been writing about public education for almost ten years now, and in all that time I can’t recall any topic where the discrepancy between Nova Scotia and the rest of Canada has been so striking. This discrepancy is made all the more poignant because unlike so many fabricated edu-crises (think snow days), the current lack of support for those affected by FASD is a major issue for not just our schools, but for our province as a whole.
The road map to rectifying this situation has already been drawn by other jurisdictions. We have parents, health professionals and training experts in our midst who would be more than willing to add their voices and expertise. We have the NBFASD Centre of Excellence right next door, and CanFASD has offered its assistance. Yet, with all that, we continue to leave upwards of forty thousand Nova Scotians languishing without anywhere to turn.
Until we change our outlook, remove the stigma, and provide appropriate education and support, our schools will continue to take in hundreds of undiagnosed FASD children every year, painfully unaware that we are doing so.
Hundreds of children who are crying out in the darkness for help.
It’s well beyond time somebody listened.