A better understanding of fetal alcohol spectrum disorder will help not only those affected by it but also the communities struggling with it more widely, says Myles Himmelreich, who has FASD.
Himmelreich a public speaker who has been to communities disproportionately affected by FASD, including in Labrador, told CBC Radio's On The Go that misconceptions about the disorder can hurt the self-worth of people living with it, leading to wider problems in a community.
"You don't feel like you have that sense of purpose because you're being told that you're not like everybody else, and you can't do things like everybody else," said Himmelreich, who lives in Surrey, B.C.
When Himmelreich was adopted at age three, his parents were told he had fetal alcohol effects. At the time, medical professionals distinguished between fetal alcohol effects and fetal alcohol syndrome by the presence or lack of facial features associated with alcohol intake in pregnancy.
However, this distinction led many to miss the fact that even those affected by alcohol consumption in pregnancy who did not have the facial features associated with fetal alcohol syndrome still struggled and needed supports, Himmelreich said.
"They now call it 'fetal alcohol spectrum disorder' because they understand everybody's affected differently," he said.
Struggles in school and with friends
For Himmelreich, challenges showed up academically and socially. At school, he had difficulty completing his work.
"Being able to process the information in the same amount of time as everybody else was very difficult for me," he said. "And then being able to retain the information and deliver it later on was also difficult for me."
His difficulties were often mistaken as laziness or an unwillingness to listen or work, and Himmelreich said he took on those labels he heard from others and applied them to himself.
"Those effects were just as impactful, if not more, as the FASD itself."
He also struggled socially as he got older because he was developmentally behind other children his age and could seem immature, he said. Those difficulties, and his desire for lasting friendship, sometimes led to him allowing himself be taken advantage of just to hold on to someone's company or attention.
A societal issues
Though Himmelreich was diagnosed with FASD as a small child, he says he didn't truly understand it until years later. Getting that understanding was key not only to learning to live with the condition but also for his sense of self-worth.
"I've always said, once I understood, made sense of, became accepting of FASD, that's when I understood, made sense of, accepted myself," he said.
It's something that society needs to talk about, deal with, and change. - Myles Himmelreich
The understanding he has now helps him cope with the ways FASD still affects his life. He has sensory issues and can become overwhelmed on public transit, in cities, and in other situations. He's able to mitigate some of that reaction by anticipating it and planning ahead, he said — having headphones or sunglasses, wearing comfortable clothing, even putting on a cologne he likes on his wrist so he can sniff it to distract from an unpleasant smell.
"I still have FASD but though I've found strategies and ways to be successful in my life with FASD, it's almost like a double-sided kind of thing," Himmelreich said. He doesn't have the facial features seen in some people with the disorder, and he seems to be doing well, so some people might not understand that he still needs support, he said.
Himmelreich hopes that understanding will extend across society. He now works as a motivational speaker, and says finding a purpose and sense of self-worth is necessary not only to help individuals living with FASD but also communities disproportionately affected by the condition.
Research suggests that Indigenous, rural, remote and northern communities are disproportionately affected by FASD in Canada, according to the federal government. However, said Himmelreich, the actual incidence of the syndrome, which crosses all societal boundaries, is likely underestimated.
"It's something that society needs to talk about, deal with, and change."