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SOMBA K'E/YELLOWKNIFE - Fetal alcohol spectrum disorder (FASD) is bigger than we know, according to Candace Demone.

"It's such a huge problem up here," said the FASD specialist at the Centre for Northern Families. "The normal standard in North America is one in 100 kids.

From left: Health Minister Sandy Lee, Kathy Paul-Drover and Frame Lake MLA Wendy Bisaro lead the walk down Franklin Avenue in support of the international awareness day for Fetal Alcohol Spectrum Disorder. - Andrew Livingstone/NNSL photo

"The numbers are greater here. A lot of people go through life not being diagnosed.

"They know they don't fit in and have trouble obeying rules but they don't really know why.

"This is more prevalent than Down syndrome."

On Wednesday morning, Yellowknifers joined in a march down Franklin Avenue to help bring awareness to the debilitating disorder.

For Health and Social Services minister Sandy Lee, it's extremely important to make people aware of the seriousness of the issue.

"I've been coming to this walk right from the beginning," she said.

"It's a huge issue for Northerners and it's preventable. We have a lot of committed people to raise awareness and help people with it."

Weledeh MLA Bob Bromley joined in the walk for the second year. He said it's an issue needing more attention in the North. "They're all people we know and love and it's important to help out any way we can," he said.

Demone said while there are statistics showing how prevalent the issue is in the North, they do not fully represent the scope of the issue. "I don't like to quote them (statistics) because I don't think they are accurate," the FASD specialist said. "We know it's far greater than the numbers that we have."

She said that misdiagnosis of FASD as attention deficit disorder and attention deficit hyperactivity disorder means people often do not know they have it.

"Not all people with FASD look like they have FASD," she said.

"Sometimes there is physical characteristics that go with it, sometimes there is not. It can actually be more difficult for people who don't have those characteristics because it's not as obvious. Any day you could walk on the street and pass someone and they may or may not have it."

Babies born with FASD face an uphill battle right from birth.

"Often, infants for example will have feeding difficulties, will cry a lot. They get very easily over-stimulated," Demone said. "When they become pre-schoolers it's usually not too bad, but it's the calm before the storm. When they get to middle school and high school, they fall apart. "

The mental age of a person with FASD is usually about two-thirds of the chronological age, said Demone. When puberty sets in, it causes a whole new set of problems for the person to deal with.

"You have a 12-year-old who's more like eight on the inside, but on the outside they start developing and going through puberty so there is a big contrast there," she explained.

"They've got this adult body with this much younger mindset. They just don't feel like they fit in. They are not understanding the abstractness of the learning in schools."

It's not so much about trying harder but trying differently. Demone said proper support systems and behavioural strategies are needed for those with the disorder to hold a job in adulthood and live a normal life.

"If a person has these supports in place and they learn different behaviour strategies they are more likely to keep a job and not end up on the street or in jail," said Demone.