People living with fetal alcohol spectrum disorder share their stories
Particpants at FASD conference in Sudbury talk about their daily challenges
People living with fetal alcohol spectrum disorder are getting the chance to tell their stories.
A conference wraps up in Sudbury Friday highlighting some of the life challenges people with FASD face .
The event is hosted by several community groups, including Health Sciences North, Neo Kids, Shkagamik-Kwe Health Centre and N'Swakamok Native Friendship Centre.
Valencia Poulton, 13, from Mississauga First Nation, said coping with the disease is a daily struggle, especially in the classroom.
"It kind of makes me anxious, more and more jittery and jumpy," Poulton said. "But I have special items at school that my teacher gives me and I fidget or I can ask to leave the room for a few minutes."
She said she's open about the disease with her classmates.
"Some of them were really supportive about it," she said. "Some of them were kind of distant toward me for a while and [now] they're OK with it."
"That doesn't make me any more different than I am."
RJ Formanek, who advocates for people diagnosed with FASD, said he didn't know he suffered from the condition until he was 47. He said the FASD puts his senses on overdrive, including an extreme sensitivity to fluorescent lights and scents.
"All of these things impact my brain and with these things going on my brain gets tired quicker, which makes me angry easier, and more reactive," Formanek said.
When he was a student, the condition made him act out, which in turn isolated him from his classmates.
"Right from the beginning I didn't get along with other kids," he said. "I didn't get invited to the birthday parties, you know, the classic things."
"By the time you're seven or eight years old you realize a lot of other kids don't really like you that much. And that's hard," he said.
Lindsay Wolfson, a researcher with the Canada Fetal Alcohol Spectrum Disorder Research Network, said the stigma around FASD is still pervasive.
"What we try to do as an organization is bring back the focus and attention and make sure that we are creating policies and programs that are supportive to individuals who may have FASD," Wolfson said.
The ways which FASD presents in individuals can differ, she added.
"There are some that are going to be affected more than others," Wolfson said. "Some of the challenges could be issues with emotional regulation. There could be issues with adaptive functioning, so the ability to tell time, keep to schedules, pay bills things like that."
She said it's also a challenge to get the first diagnosis of FASD, since there are very few diagnostic clinics, and a large, multidisciplinary team – including speech language pathologists, occupational therapists, and psychotherapists is required to make the initial assessment.
Wolfson also said it's a challenge to get such diagnoses completed early enough to set supports in place.
People with FASD also face another challenge: the stigma surrounding the condition.
"It's the only disorder that is named for the particular substance or concern that may lead to the diagnosis, which makes it really challenging," she said.
"And so some individuals may choose not to get a diagnosis.They may know that there was exposure to alcohol in the womb, and they are uncomfortable with getting diagnosis because of the implications it may have on health or education or employment services."