By Katharine Dunbar Winsor
In 2018, updated prevalence estimates were released based on two studies, indicating fetal alcohol spectrum disorder (FASD) impacts about four per cent of the general Canadian population.
Within FasdNL, the provincial organization for FASD work in Newfoundland and Labrador, we wondered, what do those numbers look like in our province?
We applied the four per cent prevalence rate to Newfoundland and Labrador’s population (about 519,716 according to 2016 data from Statistics Canada). The result? Approximately 20,788 people in Newfoundland and Labrador are believed to live with FASD.
As those are simply numbers, it is useful to put them in perspective.
FASD is often compared to autism, as they are both neurodevelopmental conditions that impact individuals across the lifespan, and individuals with both diagnoses benefit from early and sustained positive interventions. If we compare the prevalence of autism to FASD in Newfoundland and Labrador, we see that based on the provincial prevalence of autism (1.8 per cent), approximately 9,354 people in our province live with autism spectrum disorder.
Owing to these numbers and the related need, we have encouragingly seen a tremendous increase in attention to autism in this province in recent years. As part of the recently released Autism Action Plan, the provincial government has committed $5 million a year on short, medium, and long-term action items in the province.
Given that more than double the amount of people in NL are impacted FASD than autism, we can expect that the provincial responses to these conditions are prioritized similarly?
Unfortunately, this is not the case.
In Newfoundland and Labrador, the only residents who have access to FASD assessments and diagnosis must live in the Labrador Grenfell Health Region and must be between the ages of 8 and 18 years.
If you live in Corner Brook and think your child may have FASD? You are out of luck.
If you live in Clarenville and have reason to believe you may be impacted by FASD? You are also out of luck.
A minority of individuals with the means have been able to travel outside of NL to receive a diagnosis through private assessments that cost several thousand dollars.
And for the remainder of our province’s residents? Maybe you are lucky enough to find a physician who will acknowledge that, likely yes, your loved one is likely impacted by FASD (and always will be).
You see, in our province, we have a frustrating circular issue at play. FASD is severely underfunded and under-resourced in our province. We do not have the data to tell us how many people have suspected or diagnosed FASD. We do not know how professionals are talking about alcohol and pregnancy with their patients, or how many continue to tell women that alcohol in moderation (and what does moderation even mean in this context?) is ok during pregnancy.
Without the funding, without the data, we have an invisible problem. Those who are impacted by FASD in one way or another do not feel comfortable to speak up for fear of stigmatization.
People have the incorrect impression that “FASD doesn’t happen here” because it is not identified, it is not diagnosed, it is not visible, it is not funded, it is not adequately supported, and we do not fund further prevention. And for many individuals and families, FASD is not even on their radar due to the limited and often stigmatized public discourse around it.
So in practice, what does this mean for people’s lives?
It means that we have one part-time FASD co-ordinator position for the entire island of Newfoundland.
We receive more requests for the FASD training from professionals and frontline staff than we can respond to due to funding and capacity constraints.
We have extremely limited supports to offer individuals with FASD who reach out looking for support, looking for others who understand their realities.
We receive emails and phone calls from parents and caregivers desperate for information about FASD, who are isolated and seeking support.
When we receive inquiries about how to seek/obtain a diagnosis in this province from someone who lives in the western, central or eastern regions (where more than 90 per cent of the province’s population resides), we must tell them, sorry, that is not available at this time.
It means that within FasdNL, we use our year-to-year tenuous and limited funding to strategically focus our efforts that ask a central question: how do we make visible a complex public health and social issue?
We know early diagnosis and interventions are imperative to individuals’ and families’ success. We know we have a dedicated network of people across our province who continue to move FASD work forward in our province, however difficult. We know that FASD is a complex issue that, when left invisible and unaddressed, is incredibly costly. But we also know that based on the numbers of people impacted by FASD, Newfoundland and Labrador cannot afford to not make a meaningful commitment to FASD work in this province.
Katharine Dunbar Winsor is the co-ordinator for FasdNL and a PhD student at in the department of sociology and anthropology at Concordia University. She writes from Montreal.