A visiting voice on FASD

Shortly after Elizabeth King entered high school, people mistook her for a university student. "She's very articulate," said her mother Helen Hoy.

Shortly after Elizabeth King entered high school, people mistook her for a university student.

“She’s very articulate,” said her mother Helen Hoy.

But in the same breath, Hoy recounted how Elizabeth was admitted to the hospital for frostbite, in July.

She had over-iced a leg injury, said Hoy.

Over sensitivity, or lack of sensitivity to temperature is a common symptom of FASD, she added.

Hoy, and her husband Thomas King, celebrated Canadian novelist, lecturer and creator of CBC’s Dead Dog Cafe, adopted Elizabeth when she was 15 months old.

The couple knew Elizabeth’s birth mother was “alcohol-dependant,” but they couldn’t get any doctor to listen to their concerns the baby may have FASD, said Hoy.

“We kept asking the question,” said Hoy. “And we kept being told, ‘What does it matter? Wait until she has problems.’

“At 13, she finally got a diagnosis. But, by that time, we were desperate.”

King and Hoy have other children who do not suffer from FASD and raising Elizabeth definitely took some adjustments.

For example, when Elizabeth would try to do math homework, King and Hoy had to take the clock off the wall in the room she was working in because its ticking was too distracting.

The family also makes sure counters in the house are kept free from clutter, they’ve taken posters off the walls and have repainted in “quiet colours,” said Hoy.

Elizabeth, like most people who live with FASD, is easily over-stimulated.

They have a very low frustration tolerance, said Hoy.

In simple terms, the link between the thinking and emotional brain is damaged in people with FASD, said Hoy.

This makes it difficult for people with FASD to rationalize and exercise judgment, she said.

“They just do what they want to do, and what they need to do, without being able to recognize possible consequences,” said Hoy. “Emotionally, they are half the age they actually are, but they aren’t stupid. They know what their friends and people the same age as them can do and they get frustrated.”

It was hard for Elizabeth to watch her brothers and fellow students learn and retain information quicker and with more ease than she could.

And, because Elizabeth is so well spoken, she could bluff her way through many circumstances without really understanding what’s going on, said Hoy.

And Elizabeth doesn’t have “the face.”

And that’s common. Most people with FASD don’t.

In fact, ninety per cent of people with FASD look ordinary, said Hoy.

“The face,” refers to the physically obvious symptoms of FASD; a narrow upper lip with no defined philtrum (the two vertical lines between the nose and upper lip), wide-set eyes and, occasionally, very flat cheeks.

Those without these features “are expected to live up to normal expectations,” said Hoy.

Creating awareness of FASD’s hidden presence is one of two major missions for people like Hoy, who try to educate the public – and public systems – about the disorder.

The other is stripping away the stereotype of FASD as an aboriginal issue.

Hoy recalls meeting Ontario’s Education minister.

While reviewing the agenda, Hoy asked when they would talk about FASD.

That will be discussed when we get to native issues, said the minister.

Quashing this stereotype is easier than it seems, said Hoy.

Attention Deficit Disorder and Attention Deficit Hyperactivity Disorder are frequently misdiagnosed in non-aboriginal communities because white women are rarely considered alcoholics, said Hoy.

The symptoms are very similar to FASD, noted Hoy.

“It would never be assumed that those women were drinking,” she said. “I know of alcoholic white women who couldn’t even get doctors to look at their children (for FASD).”

Recent studies show women who drink during pregnancy are often college-educated, single, smokers and have a family income of $50,000 or more, said Hoy.

“Quite the opposite of the assumption that it’s marginalized, poor and often racial minorities,” she said. “And another study showed that the women who drank heavily during pregnancy were many of the things I just mentioned, and white. That was a Toronto Sick Kids study within the last 10 years.”

And drinking at any stage of a pregnancy can cause FASD, said Hoy.

In fact, “the face” and growth deficiencies are the result of drinking between day 18 to 21 – before most women, of any race, even realize they are pregnant, said Hoy.

Organ and bone deficiencies, like curvature of the spine and fingers, are the result of drinking within the first trimester, or the first 14 weeks of the pregnancy.

But the stereotype that FASD is an aboriginal issue largely comes from the way the disorder has been researched in the past, said Hoy.

The only four, worldwide studies on the issue were conducted on selected First Nation communities because it was known the populations had high levels of alcohol consumption and child distress, Hoy added.

“They were known to be at risk,” she said. “And then those studies, one of which included only 22 children from 14 mothers – in other words, very small, focused groups of individuals – are then generalized across a whole nation.”

To enforce the stereotype even more, children who endure physical and sexual abuse display similar symptoms to those with FASD, said Hoy. With the legacy of residential schools, rates of abuse, like alcohol and drug addictions, is known to be much higher among aboriginal communities.

But Hoy provides a living example of how society can gain a better understanding of the disorder.

The literary scholar and professor never studied FASD. She has never been a doctor, or a nurse, and she knew very little about the disorder – until she became Elizabeth’s mother.

Now, traveling with her husband to the Yukon for the first time, she applauds advances made in judicial systems along the West Coast of Canada.

In Ontario, where the family lives, it is rare for a judge to even recognize the disorder in court, said Hoy.

In the Yukon, judges are becoming more aware of exact symptoms and are starting to find processes for diagnosis and different ways of dealing with the high concentration of FASD sufferers in the court and prison systems.

But despite those advances, caretakers in the East and West alike are still very frustrated, said Hoy.

A perfect FASD caretaker is seen by others as “intrusive,” or “controlling” because caring for someone with FASD is more about prevention, anticipation and supervision rather than punishment and consequences, said Hoy.

And while not a First Nation issue, following an aboriginal perception of life may be a key to working with people with FASD, she said.

“Some of what are perceived as deficits are much less obvious in a culture that’s different than the western, mainstream culture – one that doesn’t emphasize desk work and cognitive work and financial transactions and timeliness,” she said. “One of being in a natural world, working with animals and plants and learning by observation and repetition and tradition. In those environments people with fetal alcohol don’t often seem particularly disadvantaged.

“There are all kinds of strengths that are not impaired by fetal alcohol. Artistic creativity: dancing and drumming actually stimulate their brain in helpful ways. They are physically able. They are very affectionate and loving. They take care of those that are less able then themselves. They love animals. So there’s lots of way in which they can be very useful, contributing members of society, and appreciated.”

Elizabeth is now 22 years old. She has had a child of her own, who was adopted by her older brother. She has graduated high school, is taking a course on culinary management and is working on getting her driver’s licence.

Hoy was in Dawson City this week, with her husband.

Both gave lectures to kick off the Danoja Zho Cultural Centre and the Yukon School of Visual Arts visiting aboriginal artist series.

King spoke about his work as a novelist and photographer on Monday. Hoy spoke about FASD within First Nations culture on Tuesday.

Contact Roxanne Stasyszyn at

roxannes@yukon-news.com

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