Better Testing Needed For Diagnosing FASD

Fetal alcohol spectrum disorder, the leading cause of developmental disability in Canada, is an umbrella term used to describe a range of disabilities that result from prenatal exposure to alcohol. 

What is the prevalence of FASD in this country?

Sterling Clarren, CEO of the Canada Northwest FASD Research Network and one of the world’s leading researchers on FASD, says that’s a good question.

“You know those initials you see at the doctor’s office ­ WNL?” Clarren asks. “It stands for ‘within normal limits.’ But in this case, it means ‘we never looked.’ ”

He isn’t joking. CEO of the Canada Northwest FASD Research Network and one of the world’s leading researchers on FASD, Clarren knows that the incidence and prevalence of FASD is poorly established because of Canada’s limited ability to diagnose the condition. The best estimate is one case for every 100 births.

“One per cent is a profound epidemic, and it’s likely higher,” says Clarren. “It could be as high as the rate of heavy drinking; the rate could equal exposure. The more people drink, the more FASD.”

According to the one-in-a-hundred model, there are 300,000 people living with FASD in this country, and another 3,000 born every year. Then there are the people who immigrate to Canada with the disorder.

“Currently, the complete diagnostic capacity in all of Canada is fewer than 2,000 slots each year, slots that are also used for other disorders,” says Clarren.

Diagnosis means a full exploration of diffuse brain damage.

“We’re way behind. It’s impossible to make any prevalence studies this way. We don’t have baselines. There’s an urgent need for accurate surveillance.”

How do we get more accurate on the prevalence numbers?

“Well, you could send us a copy of every school picture taken in Canada,” says Clarren, “and we could diagnose from that. Or you could do the right thing and develop more diagnostic clinics.”

This is not just a counting game, but a battery of expensive tests that establish a lifetime disability.

Says Clarren: “Testing maximizes our ability to work with a person’s strengths. You can do really precise interventions. The more we understand who our patients are, the better we can get in helping them. If you’re cranking along with 30 kids in a province in one year, you’re not going to get very far. And, if we can’t do a better job of diagnosing it, we’re dead in the water.” 

Ann Dowsett Johnston