Advocates seek more support for people struggling with fetal alcohol spectrum disorder

Vicky Morinville's daughter has been called lazy and difficult because she was born with a disability that's largely misunderstood and hard to diagnose.

An estimated four per cent of Canadians have fetal alcohol spectrum disorder (FASD), more than autism, Down syndrome and cerebral palsy combined, according to a national research network.

FASD is a prenatal brain injury that can occur when a fetus is exposed to alcohol.

It can take decades to get a diagnosis, and parents and advocates say finding support is a struggle in Nova Scotia where there's no dedicated FASD clinic, unlike some other provinces.

"These children will end up homeless or in the criminal justice system where they don't belong because these families can't access and can't advocate for other resources to help their children," Morinville, who lives in Cole Harbour, N.S., told CBC's Information Morning. 

For Morinville's daughter, who is adopted, the signs were noticeable early on.

At four months, she was having trouble turning her head, making eye contact and settling down, and was officially diagnosed at age two. She is now an adult living the care of the province.

Morinville said many of the resources that are available for young children with FASD fade away once they enter school.

"It's a lot of times left up to the learning centre teacher or classroom teachers, and these teachers have enough on their plates without trying to deal with these issues as well," said Morinville, who has two other adopted children with the same disorder.

Need for specialized professionals

As a child, Francis Perry was always getting into trouble but didn't know why. He recalls sitting in classrooms and being distracted by the persistent hum of the lights above his head.

"When I was trying to pay attention to what the teacher was telling me, it was like Charlie Brown's teacher," said Perry, who grew up in Barrington, N.S. "So I'd just [be] looking at her lips moving and listening to the hum of the florescent light bulbs."

When Perry was 19 he finally got an answer. He was diagnosed with FASD at the IWK Health Centre in Halifax, which felt "like someone had lifted a huge weight off my shoulder."

But he soon realized there were few places in the province he could go to for help. 

"It would be nice to see some kind of drop-in centre where parents could go with their children, and to spend the day with ... someone specialized in just fetal alcohol spectrum disorder," said the 47-year-old who now travels across Canada sharing his story. 

People are affected differently depending on where they fall are on the spectrum, according to Audrey McFarlane, executive director of the Canada Fetal Alcohol Spectrum Disorder Research Network.

They might have trouble with impulse control, difficulty making good decisions, have trouble remembering or be easily manipulated, she said. 

Rates of the disorder are higher in vulnerable populations, including children in welfare or foster care.

Waiting lists are growing

Robert McInerney, a neuropsychologist with a private practice in Halifax, said apart from the IWK Health Centre, he's the only health professional in Nova Scotia who diagnoses the disorder. 

That means his waiting list is growing.

"We need to be thinking more about this disorder and realizing that it affects far more people than previously thought," he said.

McInerney said children are often believed to have autism or behavioural problems when FASD is the actual culprit.

"Treatment for FASD doesn't need to be magical or mystical, but it needs to be practical," he said. "It needs to see the issues for what they are and tackle those issues head on."

Nova Scotia is not part of the national network, a member-based group that provinces pay a small fee to join. McFarlane said her group has written to the provincial government asking them to join, but is always turned down.

"Other provinces have dedicated funds and policy and services for this population both on the prevention side and on the service delivery side," McFarlane said, pointing to New Brunswick, which has a dedicated centre for FASD. 

We need to be thinking more about this disorder and realizing that it affects far more people than previously thought.-Robert McInerney

The Department of Health and Wellness said diagnostic and treatment resources do exist at the IWK, in public schools and through government services.

"Children suspected of having fetal alcohol spectrum disorders (FASD) are referred to the IWK's Developmental Pediatrics Clinic for assessment that can involve a multi-disciplinary team including a developmental pediatrician, developmental clinic nurse, a neuropsychologist and an occupational therapist," spokesperson Heather Fairbairn said in an email to CBC News. 

Fairbairn said supports are also available to children before they enter school through Nova Scotia's Early Childhood Development Intervention Services, and that the province provides education about the risks of FASD through the Nova Scotia Health Authority and online. 

Still, families and advocates say because FASD can be so hard to diagnose, what's really needed is a dedicated clinic.

McInerney said more education is also needed so that people realize the risks of drinking alcohol during pregnancy.

But he's quick to add that all of the parents he's worked with over the years had no intention of harming their babies.

He believes the stigma surrounding FASD is stopping people from getting the help they need. 

"It drives the issue almost underground," he said. "People don't want to talk about it."

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