When it comes to fetal alcohol spectrum disorder, there’s one thing everyone can agree on – an expectant mother who drinks while pregnant can irrevocably damage her unborn child.
And because we agree on that, we know remarkably little else.
Because the cause and effect is so clear and the blame so precise and unavoidable, that society is unwilling, or politically incapable to deal with the problem head-on.
Currently, Yukon officials don’t know how many children suffer from FASD, an umbrella term that covers several different conditions rooted in maternal drinking.
We don’t have a perfect diagnosis program.
And we don’t track people who suffer from the disorder throughout their lives.
That is, we know almost nothing beyond the cause and effects.
The fear of stigmatization has long prevented the government from being overtly aggressive about mitigating FASD, said Jan Langford, senior policy analyst for the Health and Social Services Department.
Not only are the ethical dimensions of putting optics over health shaky, but it’s expensive too.
The latest research puts the cost of lifelong handling of FASD sufferers between $1 million and $3 million per person.
But we have no idea how many Yukoners suffer from it. The only major study on FASD prevalence is 20 years old and methodologically unsound.
The unpublished study done in 1989 looked at 781 children in Yukon and northwestern British Columbia. It found 82 cases of FAS and 94 of FAE (fetal alcohol effects.) The children were aged 0 to 16. Of the children, 586 were First Nation and 195 non-First Nation.
“Among aboriginal children in the Yukon, the rate of FAS was estimated at 46 per 1,000,” says a review of the research by the National Collaborating Centre on Aboriginal Health.
That’s “substantially greater than the 0.4 per 1,000 for non-aboriginal children,” says the review.
But “since the children were identified as chronically handicapped prior to the study, the rates likely do not reflect the population as a whole. No controls for socioeconomic status or data on the degree of maternal drinking are included in this study,” it says.
The Yukon’s handle on diagnosis isn’t perfect, either.
A study completed in 2007 took stool samples from 297 babies born in Whitehorse. The diagnostic method, known as a neonatal meconium study, is meant to be an indicator of FASD. But the study found especially strange numbers in the Yukon, leading researchers to question the data.
The rate of those who had low levels of alcohol traces in their stool was 26.9 per cent per 1,000 births. While the rate for those with high levels of alcohol traces was 3.4 per cent. Those results represent indicators of possible FASD, not actual cases of the ailment.
The national average of FASD is nine cases per 1,000 births.
In the Yukon, diagnosis is done by a team of researchers who evaluate kindergarten students and those in elementary school, said Langford.
But because of costs and logistics, only 10 individuals are diagnosed a year, she said.
The government can’t tell how many children are going undiagnosed.
“All we can do is take the national stats and figure out how many that our population has,” said Langford. But that’s far from accurate.
The latest FASD research emphasizes the individual nature of the illness, meaning no two sufferers are alike.
But the Yukon government doesn’t track individuals over their lifetime, meaning a government system of monitoring the specific aspects of someone’s conditions doesn’t exist.
Currently, the government only offers generic treatments for youth and adults, said Langford.
FASD also promotes a vicious cycle of intergenerational drinking.
In a 2000 study of 80 mothers who have a child with fetal alcohol syndrome (one of the distinct illnesses under the FASD umbrella), 79 reported having a parent who drank heavily.
Over 90 per cent of people with FASD suffer from mental- health problems and 50 per cent of people with mental illness use alcohol and drugs to treat themselves, a 1996 disabilities study found.
FASD can be especially difficult for someone in court. A symposium in 2008 on justice and FASD in the Yukon found diagnosed individuals have a hard time processing the events in a court and participating in meetings and court hearings.
Research shows that people with FAS are much more likely to run into the law, adding to the societal cost of alcoholism.
Early recognition and monitoring of FAS could mitigate future run-ins with police, the symposium’s report says.
Treatment for FASD usually consists of long-term external support and supervision, including special housing. Since FASD consists of irreparable brain damage, mitigation is the best policymakers can hope for.
The condition disproportionately affects aboriginals, say some researchers. Tracking by hospitals shows 75 per cent of FASD cases are First Nation, though they make up only six per cent of births in Canada, writes Frances Widdowson in her book Disrobing the Aboriginal Industry.
The fear of stigmatization has made policymakers lazy toward FASD’s urgency for decades, argues Widdowson.
“There has been no attempt to systematically document the extent of the syndromes in the aboriginal population across Canada,” she says.
The last major national study of aboriginal health problems in 1995 didn’t mention FAE or FAS.
A committee in the House of Commons in 1992 found that programs targeting aboriginals would stigmatize them.
The Yukon is hosting a symposium on fetal alcohol syndrome in September. Around 150 Outside experts and local officials will look for solutions to help mitigate the effects of a condition that has no cure.
The symposium is part of the Canada Northwest FASD Partnership, which unites researchers and policymakers from seven provinces and territories to brainstorm the problem. The 10-year-old partnership’s main aim is to share information, said Langford.
Contact James Munson at