Shining a light on FASD

THE CANADIAN government says Fetal Alcohol Spectrum Disorder is the No. 1 preventable neurological disorder in the country. It can lead to learning disabilities and lifelong physical, mental and behavioural problems.

Yet, there’s no way for children suspected of having this condition to be diagnosed or effectively treated in Hamilton.

The term fetal alcohol spectrum disorder (FASD) describes the range of effects that can apply to a person exposed to alcohol before birth. Roughly one per cent of the Canadian population — about 355,000 people — have FASD.

However, there are currently no diagnostic clinics for FASD in Hamilton. As FASD is a complex diagnosis requiring a team of doctors, social workers, occupational therapists, speech and language specialists, and other personnel, Diagnosing FASD is an expensive and time-consuming process requiring a team of doctors, social workers, occupational therapists, speech and language specialists, and other personnel.

Local families used to be referred to St. Michael’s Hospital in Toronto for a diagnosis, but due to heavy demand, it’s no longer accepting anyone who lives outside Toronto. As a result, social workers and local advocates say Hamilton families aren’t getting the support and resources they need.

“What families tend to do is proceed with the assumption that there’s a diagnosis,” said Arnold De Vries, the team leader on the intensive child and family services program at the Lynwood Charlton Centre. “It also means there aren’t a lot of services directly geared toward FASD.”

Saturday is International FASD Awareness Day — a global campaign of support and advocacy held on the ninth day of the ninth month of the year to symbolize the nine months of pregnancy. The Hamilton FASD Community Initiative is hosting a rally at city hall Friday morning to bring awareness to this often-misunderstood and underrecognized condition.

People with FASD often present with a lack of attention, are easily dis--

FASD is often overlooked because it is preventable.

tracted, and can get jumpy or antsy. Many act about half their chronological age. Many have behavioural issues and can experience aggressive outbursts, while others can become withdrawn. Sometimes, says De Vries, they’re often just categorized as “bad kids.”

FASD is also often overlooked because it is preventable. There is a stigma associated with the disease — something Courtepatte and his group are trying to counteract. “We always say ‘no shame, no blame,’” explains Mark Courtepatte, the co-chair of Hamilton FASD parent and caregivers support group.

Unlike other developmental conditions like autism, FASD disproportionately affects children with complex social needs. Often, children with FASD come from households experiencing poverty, mental health and addiction issues. In Hamilton, 80 per cent of kids with FASD are being cared for by someone other than their biological parent, Courtepatte says.

This spring, the province announced it would spend $26 million over four years to expand support for children, youth and families affected by FASD. However, none of the funding is dedicated to creating a diagnostic clinic for the Hamilton area. The Ministry of Health and Long Term Care says it “is working to better understand FASD diagnostic services across Ontario” and that it is reviewing “gaps, opportunities and options.”

That’s not enough for Courtepatte. “It’s shameful. It’s disgraceful,” he says.