Sick with misunderstanding

Some children falling through the cracks in FASD diagnostics

Mark Reimer

Fetal Alcohol Spectrum Disorder (FASD) affects many children in Manitoba, but experts say red tape and an overwhelmed public healthcare system may be keeping some kids from the supports they need.

FASD is an umbrella term that includes many diagnoses for effects related to alcohol consumption during pregnancy. The diagnoses exist in a continuum, depending on the known facts about a child’s fetal development and their measurable symptoms.

But diagnosis of FASD is an imprecise art, said Dr. Albert Chudley, medical director of the Winnipeg Regional Health Authority (WRHA) program in genetics and metabolism and University of Manitoba professor.

“Attributing it to alcohol when you don’t know it is alcohol is dangerous and imprudent,” Chudley said.

Only those children in whom facial and growth abnormalities are observable can be diagnosed with Fetal Alcohol Syndrome (FAS) without confirmation that the mother drank while pregnant.

Just throwing money into the system may not solve all the problems.

Sheri-Lynn Skwarchuk, University of Winnipeg

When the effects are subtler and the history unknown, some children fall through the diagnostic cracks.

Those who are not properly diagnosed miss out on crucial government funding and future school support.

One reason for these missed diagnoses is that many mothers are hesitant to admit alcohol use during pregnancy due to the stigma surrounding the disorder, Chudley said.

But according to him, it’s not about pointing fingers, but about what’s best for the child.

“If they’re not recognized, you don’t get the right treatment,” Chudley said.

A missed diagnosis can lead to the onset of what Chudley calls secondary disabilities: largely preventable social consequences including school drop-out, homelessness and addiction.

Children entering the school system with an FASD diagnosis receive a personal needs assessment from a team of parents, teachers and community experts.

The Government of Manitoba provides schools with different levels of funding based on these needs, said Sheri-Lynn Skwarchuk, a former school psychologist and University of Winnipeg special education professor.

Due to this specialized process, the system is often straining to adequately help everyone, she said.

“It just seems that there’s not enough funding to go around.”

But funding itself isn’t her only concern.

“Just throwing money into the system may not solve all the problems,” she said.

Skwarchuk would like to see more research into how children with FASD can succeed in school.

Another area of concern for Skwarchuk is what becomes of these children once they reach adulthood and school-based supports abruptly end when they may be needed most.

“We call the period of adolescence and FASD ‘the great train wreck,’” said Brenda Bennett, executive director of FASD Life’s Journey Inc., a government-funded organization that provides support systems for people with varying degrees of FASD as they transition into adult life. These programs include Spectrum Connections FASD Services, a mobile team providing support to people with subtler forms of FASD who would not qualify for other programs.

“It very much helps those kids who may have fallen into the great black hole after the age 18.”

This program is the only one of its kind in Canada, Bennett said.

For Chudley, the priority is to address current behaviour surrounding binge drinking, to prevent occurrences of FASD in the first place.

“I think people’s attitudes have to change about alcohol consumption,” he said. “We’re playing with fire.”

Published in Volume 63, Number 19 of The Uniter (February 5, 2009)

Related Reads