FASD is associated with a bewildering number of symptoms. But as Vanessa Hrvatin writes, the biggest barrier to early detection and treatment may be social not biological. Photography by Leah Henne…
FASD is associated with a bewildering number of symptoms. But as Vanessa Hrvatin writes, the biggest barrier to early detection and treatment may be social not biological. Photography by Leah Hennel for Postmedia. Vanessa Hrvatin Paul Thompson often told himself he’d never amount to anything.
It was slow going. Weeks turned into months, months turned into a season. Thompson managed some work, but routines were difficult for him and he was easily frustrated. It wasn’t until Glenda attended a workshop on Fetal Alcohol Spectrum Disorder that “a light kind of went on,” she says. Both FASD advocates and medical researchers are now trying to make sense of what’s been standing in the way of early detection and treatment — and whether emerging science might offer new solutions.
But disclosure comes with risk. Mothers may fear they will lose their children to social services; across North America, more than 15 per cent of kids in child welfare are suspected of having FASD. Or they may simply fear judgment, rather than sympathy or a willingness to understand, when they talk about drinking during pregnancy.
But what if alcohol exposure impacts two, rather than three, brain domains? Or a child suffers in multiple domains, but is just above the cut-off point for what diagnosticians consider meaningfully impaired? In 2016, a team at the University of British Columbia studied DNA samples from more than 200 children and found similar epigenetic “signatures” among those either diagnosed with FASD or exposed to alcohol in utero.
But the findings out of UBC, which investigated more than 400,000 genetic sites to identify a pattern associated with FASD, are promising enough that Hicks is now working with a large team to develop a clinical tool to help flag children at risk of the disorder. When her son refused to take medication during high school, one Edmonton mother recalls, he became so aggressive that he threatened to kill his principal. Instead of assigning a social service worker to his case, the school expelled him.
In 1995, the Winnipeg School Division responded to data showing an increase in students with FASD in the province by establishing a classroom specifically designed to address common challenges of the disorder. Teachers take children through the curriculum at a slower pace, offer such spaces as soundproof rooms to mitigate sensory overload, and help kids understand both how FASD affects the brain and how they can address their difficulties.
For all that, she says her diagnosis still fundamentally changed her for the better. “For 47 years I believed I was bad and stupid, just a person who always made bad decisions. When I got the diagnosis I realized this wasn’t my fault. I wasn’t a problem — I had a problem.”
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