Kitchener-Waterloo

Ontario FASD diagnostic services can't meet the demand

Medical experts say a lack of diagnostic services in Ontario is preventing people with fetal alcohol spectrum disorder from reaching their full potential.
It took Helen Hoy nine years to convince medical specialists that her daughter had FASD. (Melanie Ferrier/CBC)

Medical experts say a lack of diagnostic services in Ontario is preventing people with fetal alcohol spectrum disorder from reaching their full potential. 

There are only nine locations in the province where a person can receive a FASD diagnosis for free. 

Guelph resident Helen Hoy says that there were even fewer diagnostic clinics 20 years ago, which is when she began to suspect that her adopted daughter – her youngest – had FASD. 

Despite her intuition, Hoy says it took nine years to convince medical specialists that her daughter had the disorder. 

"It felt amazing to be the person who knew more than all the specialists," Hoy said in an interview with CBC News. "At one point, when we were seeing the mental health people here, we were told – and this was at least supportive – 'You know four times as much about FASD as we do and you'll have to be your own case worker'."

Hoy said that by the time her daughter was diagnosed with FASD at the age of 13, she was was too old for many of the interventions that would have helped her cope with her disability, such as sensory integration therapy.

Since Hoy's daughter was diagnosed, two FASD clinics have popped up in the area: one in Wellington County and another in Waterloo Region. 

Emily Gray, who co-chairs the steering committee of Waterloo's diagnostic clinic, says the multi-disciplinary team is committed to diagnosing as many children as possible, but resources are hard to come by and the clinic is only able to see 10 clients each year. 

"There's no funding for this service," Gray says. "The diagnostic clinic is operated through in-kind donations from our partner agencies."

Last year, those donations ran short and the clinic wasn't able to meet its goals. Gray said the diagnostic team tried to see as many children as it could, but some assessments had to be put on hold. 

Families aren't the only ones suffering from the lack of FASD diagnostic services. 

"We don't know in Ontario what our incidence is, because we're not even looking except in a few spots," says Dr. Louise Scott, a member of Waterloo's diagnostic clinic and a neuropsychologist with her own practice in Paris, Ont.

The federal government estimates FASD affects 1 per cent of the Canadian population, but Scott believes that many people with FASD remain undiagnosed and, as a result, the number of people with the disorder could be as high as 5 per cent.

Scott says society's understanding of the prevalence of FASD will be incomplete as long as diagnoses are hard to obtain.

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