When it comes to combating FASD, critics say the provincial government is failing at the most basic task: counting the cases.
The most commonly used estimate is that about one per cent of people have fetal alcohol spectrum disorder. In Manitoba, that would mean about 11,000 people live with FASD -- the population of Steinbach.
But researchers say those figures are far too conservative and justify the relatively paltry dollars spent on FASD prevention and treatment.
Manitoba has no mechanism of its own to count FASD cases. No one knows whether it's more common here, as many suspect, or whether it's on the rise.
"We're all just guessing," said Brenda Bennett, director of FASD Life's Journey and one of the few advocates for adults with FASD in Canada. "When I know the majority of people with FASD in Manitoba go unidentified and unserved, it's really heartbreaking."
If each child were screened for FASD at birth or in elementary school, "they wouldn't be a mystery to every teacher, every foster parent, every social worker, every guidance counsellor, every judge and legal aid lawyer..." said Bennett.
Healthy Living Minister Jim Rondeau says universal screening is probably not on the horizon and prevention and treatment -- not counting -- are the priority.
"Part of the problem is that no one has measured FASD children in the past, but what we can do is, through education, through programming, we can make a difference in the future," he said.
Manitoba Liberal Leader Jon Gerrard, a pediatrician before he entered politics, says properly measuring the rate of FASD is the only way to know whether millions of dollars spent on television ads, support groups and social programs are working.
"If you haven't quantified the problem, how do you know whether you are solving the problem?" asked Gerrard.
Albert Chudley, a Winnipeg pediatrician and professor who is among North America's top FASD experts, agrees.
In the early 1990s, Chudley started to count possible cases of FASD as part of Manitoba's contribution to a national registry of congenital anomalies. That project was cancelled in 1993 and never reinstated. The province says screening babies for FASD just doesn't work because the full range of alcohol effects often doesn't appear until kids hit school age.
"For 18 years, we've been dragging our feet, collectively," said Chudley. "To say, 'We don't want to count, we just want to prevent' -- the two are very closely related."
There's no simple test, like a blood test or a brain scan, that can quickly determine if someone has FASD. Diagnosis involves a team of experts and can take months. The only place to get a diagnosis in Manitoba, the FASD Centre based out of the Rehabilitation Centre for Children, is backlogged.
FASD is also seen as an aboriginal disease, so it goes under-reported among non-aboriginals. Experts such as Chudley say it's likely doctors treating the troubled children of white, middle-class parents zero in on similar cognitive problems such as attention deficit hyperactivity disorder and never think about prenatal alcohol exposure.
The FASD Centre has already identified more than 1,000 kids with FASD in its dozen years of operation, and the province says those data are the start of a counting process.
This fall, experts will gather in Manitoba to talk about better ways to determine FASD prevalence.
OF THE 16,000 BIRTHS IN MANITOBA PER YEAR
21 have Down syndrome (13.2 per 10,000 total births)
103 have autism (1 in 155 children)
144 have FASD (9 per 1,000 babies)
-- Estimates based on data from the Canadian Congenital Anomalies Surveillance Network and Health Canada.
-- On one remote Manitoba reserve, where teachers complained half their students couldn't learn, doctors such as Winnipeg's Albert Chudley and Michael Moffatt looked at 179 children and found 40 per cent had been exposed to alcohol in the womb and almost 10 per cent had some form of FASD. That's 10 times the estimated average. Chudley called it an "epidemic."
-- The most severe form of FASD might be rampant in northeastern Manitoba. Researchers combed through the records of all 745 babies born at the Thompson hospital in 1994, tracked down and personally examined the babies who appeared to be developmentally delayed. Researchers found five undiagnosed cases and estimated as many as 1.5 per cent of the babies might have the most serious version of FASD, fetal alcohol syndrome.
-- According to a 2001 study, in one county in Washington state, at least 3.1 per 1,000 first-grade students were found to have the most serious form of FASD.
-- A relatively new paper by a group of American researchers says all the best estimates are lowballed. In fact, it found, two to five per cent of school-aged children might have FASD in the United States and some Western European countries.