After a decade of FASD-related work, this N.L. advocate looks back — and ahead
An organization working to increase awareness, diagnostic options and training around fetal alcohol spectrum disorder in Newfoundland and Labrador says more work needs to be done to support people with the disorder.
The provincial group fasdNL was officially formed in December 2012 out of regional committees, due to a need for "more collective action," says executive director Katharine Dunbar Winsor.
"The need came from a recognition that FASD is more common than the general public understands it to be. And that not only is it common, it is complex," said Dunbar Winsor.
"There needed to be some more of a concerted effort to address how to educate people."
Fetal alcohol spectrum disorder, short FASD, results from alcohol consumption during pregnancy, which can negatively impact the fetus's brain. As it develops throughout the entire pregnancy, the effects differ depending on the stage of the pregnancy during which alcohol is consumed. That's why FASD is a spectrum disorder similar to autism, with each person affected presenting differently, said Dunbar Winsor.
The prevalence of FASD in the general population is estimated to be 4 per cent — about 21,039 people provincially — which makes it more prevalent than autism spectrum disorder, which about 1.5 per cent of the population lives with.
Yet there's "a long way to go" to improve public awareness, said Dunbar Winsor.
"It's a condition that continues to have myths and stereotypes associated with it, and with that, stigma," said Dunbar Winsor. "It is difficult sometimes to really get across how common it can be."
She said there are different reasons people consume alcohol during pregnancy, such as not knowing about the pregnancy, thinking small amounts don't cause harm or using alcohol as a coping mechanism.
Hence, education and training to disperse misconceptions — by the public, health-care providers and families of people affected — is a major part of the organization's work.
On the provincial-government level, said Dunbar Winsor, the recognition of the disorder as a priority area of work and its inclusion in the Alcohol Action Plan released in July, shows "tremendous progress".
Yet, she said, the diagnostic assessment capacity still needs work. Only one diagnostic team for those who suspect they or a loved one might have FASD exists in the province — in Happy Valley-Goose Bay, for children and teenagers aged eight to 18.
Health Minister Tom Osborne says including FASD as an action item in the Alcohol Action Plan was important considering alcohol-related provincial statistics.
"Newfoundland and Labrador has the highest rate of heavy alcohol consumption in the country, the highest rate of impaired driving in the country," said Osborne, "so this was one of the areas that the province ... felt was an important area to focus on."
Over the next five years, he said, the provincial government will provide funding to the fasdNL network as part of the Alcohol Action Plan.
Osborne said he was unable to provide details on a possible expansion of diagnostic assessment options to the island but said there's a specific need for services in Labrador.
"In the northern regions of the province it's seen as particularly important. The rates of alcohol consumption are higher within certain populations in the province. And it was felt certainly that the consultation with our Indigenous communities throughout the province was very important in leading to some of the items within the action plan," said Osborne.
While a diagnosis helps families understand behaviours and better develop strategies to handle them, it is only one piece of the puzzle, said Dunbar Winsor.
"It's not enough to just get people diagnosed," she said. "We have to follow up and be able to offer some type of tangible information and support."
Looking ahead to the next 10 years, Dunbar Winsor said much remains to do for the organization — developing resources, increasing the access to low-barrier education, and offering regular support meetings to caregivers of people with FASD.
In addition, said Dunbar Winsor, developing non-stigmatizing prevention strategies for FASD is also crucial, such as making it a "key piece" of medical education.
The next major step, said Dunbar Winsor, will be a FASD conference hosted by the organization in St. John's in the spring of 2023, which will connect academics, health practitioners and people with lived experience, and address related topics, such as housing or harm reduction.
The conference is part of a three-year Atlantic research project, which is funded by the Public Health Agency of Canada and will be used to identify the priority areas of work and to help inform government policies.
"Having that research component within the organization gives us an ability to navigate the lack of data that we have within Atlantic Canada and help support not only community-level work but also government-level work," said Dunbar Winsor.
"So, there's lots to do. We won't be bored."
