Saskatoon held a national conference on fetal alcohol spectrum disorders (FASD) in TCU Place on Tuesday, bringing together individuals with FASD, policy makers, and professionals to talk about the disorder.
“There is so much shame and blame and stigma with FASD,” said Myles Himmelreich, who lives with FASD.
Himmelreich was the MC for Tuesday’s conference and said it is important that people living with FASD have a seat at the table.
“There should be nothing about us without us,” he said.
According to the FASD Network of Saskatchewan, an estimated four per cent of Canadians have the disorder, which affects the brain and body of people who were exposed to alcohol prenatally.
“It might affect processing speed, it might take a little longer to do something, memory problems, heightened sensory issues,” Himmelreich said.
He said while growing up, he lacked support in school or at home.
“Because I didn’t have the facial features that stuck out a lot, the things that I experienced were just seen as bad behaviours. I wasn’t supported in school because I should have just ‘tried harder’. At home I was seen as that kid that just wasn’t listening to their parents.”
Himmelreich said he didn’t fully understand what FASD and processing issues were until he started attending conferences in his late 20s.
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“A lot of times we will hear FASD individuals are victims who suffer. I believe if you can understand FASD and figure out strategies, you go from being an individual who suffers to being an individual with FASD who is resilient.”
He said that FASD should be normalized like other disorders including autism, ADHD and Down syndrome and that it should be talked about and supported just as widely.
He added that support should come from programming and financial supports.
“Why are we focusing on putting shame and blame on birth moms when that’s doing nothing but holding us back,” Himmelreich said.
Andrea Kotlar, executive director of the FASD Network of Saskatchewan, said the organization just received an additional $275,000, which will help expand its reach across the province.
“When we talk to service providers, often people with FASD are not successful in their treatment programs or recovery programs. We want to look at them from an FASD-informed lens and help out other programs that are running to get people more successful in their recovery.”
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