Doctors, Judges, Lawyers Agree More Needs to Be Done About Fetal Alcohol Exposure

By TIM COOK

REGINA (CP) – They do what they can to help people suffering from the effects of being exposed to alcohol before they were born, but doctors, teachers, judges and lawyers all agree on one thing – the task is huge and the resources are scarce for a disorder perceived as being a problem of the poor.

“There’s no way we are doing the right things – we are not,” says Dr. Gideon Koren, a professor and director of the Motherisk program at the Hospital for Sick Children in Toronto.

“It’s not a disease where you will see 2,000 women walking the streets of Vancouver or Toronto for breast cancer, or for moms against drinking and driving or for cystic fibrosis.

“Compared to some other maladies, from heart to stroke to cancer, there is no big societal drive to do something.”

There are no reliable numbers on how may Canadians have some form of fetal alcohol spectrum disorder, or FASD. It’s so underdiagnosed or mislabelled that experts say it is tough to get an accurate handle on the problem.

Health Canada estimates that about one per cent, or 300,000 Canadians, suffer from some form of the disorder. That’s one child in every 100 births, or about 4,000 new cases each year.

Long after a woman begins drinking during her pregnancy, the results show up as a drag on the justice, health, education and social services systems.

One of Koren’s PhD students recently published a paper looking at the monetary toll FASD is taking on the country. When medical costs, costs associated with loss of productivity and the costs of some of the crimes committed are factored in, the estimate is $4 billion annually, or about $1 million per person with FASD over their lifetime.

“The costs are huge,” Koren says.

Damage done to babies exposed to alcohol before birth has occurred throughout history, but fetal alcohol syndrome only began to be recognized and understood in the 1970s. Since then, the term fetal alcohol spectrum disorder has developed to describe the range of problems caused by mothers who drink.

The signs can often be subtle.

Young people who have FASD can have problems with memory, concentration, learning and behaviour. Without the proper help, kids struggle in school. They are impressionable, easily led and susceptible to making bad decisions.

“Teenagers with this disability have a really hard time fitting in,” says Cheryl Charron, who works with teenagers and young offenders in her job as manager of FASD services at the Regina Community Clinic.

School can be a particular problem because young people with FASD do best following routines, so every noise and movement can be a distraction. Constantly changing subjects and classes is hard.

“All of a sudden you can’t do Grade 10 science, you can’t remember which class to go to. When the bell rings, it throws you off. You’re stressed out because you can’t remember your teacher’s name. You’re stressed out because you are in a new classroom every 55 minutes – what happens is generally those kids tend to start to drop out,” Charron says.

A community school in Winnipeg has had success teaching young children with FASD by setting up a classroom that is free from distraction and has soothing music to help the kids focus, Charron says.

Midori Harth, a 19-year-old Regina woman who is coping with the disorder, got through high school with headphones on so she could filter out all the noise.

Still, it was a lot of work. She would come home from school and study all night, catching up on sleep at lunch.

Harth can also have trouble with what she calls “wiping the blackboard clean.” One day, after taking piano for six years, she forgot everything she knew and had to start from scratch.

“I have to work twice as hard as anybody else. I can’t just slack off at anything.”

Awareness, recognition and support have all been slow to come, advocates say. Just getting an assessment and diagnosis is a chore because of lack of resources. Housing and supervision have been hard to come by as well.

First Nations communities have been among the most earnest in the fight against FASD.

While the disability can affect anyone, there is a perception that it is more of a problem for aboriginal people and their communities. There is no reliable data to back that up and experts say that perception may exist because First Nations women are over-represented in the research that has been done.

Whatever the case, Dr. Kim Barker, public health adviser with the Assembly of First Nations, says FASD has developed into another one of the symptoms of a cycle of poverty for some First Nations.

“It knows no colours or creeds, but what it does know is poverty, and unfortunately in Canada one of our largest groups of marginalized populations at risk are First Nations,” she says.

In La Ronge, Sask., lawyer Harold Johnson has filed a lawsuit against the federal government. He is hoping to get the lawsuit certified as a class action on behalf of the people of Treaty 6. The argument is that Ottawa has a “duty of care found in the treaty” to protect those covered by the treaty from alcohol.

Johnson says he was inspired by a child he knows in La Ronge. The boy has FASD and will have to have his skull broken at some point so that his brain can grow to a normal size.

“It’s out there,” Johnson said. “Look at somebody’s criminal record sheet and you have a pretty good idea what you’re dealing with. You have a really nice guy sitting in front of you and he’s got a criminal record that’s three pages long.

“It’s having a huge impact on the justice system.”

That system is slowly taking steps to face the problem.

Mary Ellen Turpel-Lafond is British Columbia’s children’s representative and, before that, was a provincial court judge in Saskatoon. She estimates that 50 per cent of kids in youth court while she was on the bench had FASD.

“As someone who played the role to lock the prison door, it was not a pleasant experience to have to do that with a child that was disabled,” she says. “I would often think, what if it was that all these kids were diabetics? They were in a diabetic reaction and did something. Would society be more compassionate?”

In Manitoba, the provincial court is currently running a project in Winnipeg for young offenders suspected of having the disorder. Once they admit their crimes, they are channelled to a special court where they are assessed for the condition and sentenced specific to their needs.

But only a small number of young people can be put though the program because it is so labour intensive. Since 2003 about 125 young people have been referred and 31 assessments done.

“It’s not always successful,” says Raymond Wyant, chief judge of the provincial court in Manitoba.

“Sometimes it’s two steps forward, one step back with some youth who have difficulties but … hopefully you can have them lead productive lives.”

Experts and advocates agree that more needs to be done to both prevent FASD and help those already afflicted. Some question whether we even know the problem’s scope.

“I don’t think we’ve tapped into it yet,” Charron says.

“I think we are standing on the tip of an iceberg. We might have a statistic, but I’m not sure anyone knows what that means.”

-With files from Dirk Meissner in Victoria.