A Saskatchewan university professor says Canada needs to step up its support and services for those living with fetal alcohol spectrum disorder.
Over the summer University of Regina professor Michelle Stewart travelled across Canada’s provinces and territories speaking with individuals and families living with FASD.
FASD are a group of conditions that result from a mother who drank alcohol during pregnancy. Disorders include slight changes in facial features, short height, low body weight as well as hearing and vision problems.
What Stewart discovered was how devastated some families were because of a lack of services available nearby.
“I was quite struck at how devastating it is for families when they’re not supported. Listening and spending time with families, sharing their very difficult stories of sometimes raising kids with a very challenging disability and feeling like they are not getting support to do that,” Stewart said.
Stewart added this boils down to two things: consistent access across the country and misconceptions about individuals who have FASD, making it difficult for them access the support they need.
People don’t understand that FASD is a lifelong disability.
– Michelle Stewart, U of R
“It’s very hard to consistently listen to families sharing stories of grief and struggle province-to-province. That’s something we need to do better by families through community work,” she said.
Compared to the rest of the country, Stewart said Saskatchewan is fortunate to have a lot of programs based in Regina and Saskatoon including good mentorship and life-coaching programs.
Stewart said Regina has the capacity for adult diagnosis, something that’s not available in many centres.
“We also have alternative justice practices like the mental health court and drug treatment courts that are trying to think different about the needs of individuals when they encounter the justice system,” she said, adding there’s still room to improve support services for individuals with FASD.
An invisible disability
Overall, what Stewart found through her research was there are some communities and regions in Canada without any resources for FASD. That needs to change, she said.
Stewart also discovered there’s a lot of stigma surrounding individuals with FASD and that’s probably one of the biggest challenges.
“People don’t understand that FASD is a lifelong disability. And I think they only see disability, they don’t see any ability. And people with FASD are living with a disability — often an invisible disability — and that can really cloud how they access resources,” she said.
Because people with FASD don’t have a clear, visible disability it’s difficult for others to recognize the illness.
“Individuals with FASD have a complex cognitive disability, sometimes it’s also experienced different ways in their body and it’s not understood because it’s not seen,” she said. “We constantly see that people are having to advocate and fight for the resources they need because people don’t believe they are trying hard enough, so that’s a big challenge.”
Disclaimer: The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.