Children with fetal alcohol spectrum disorder aren't getting the supports they need because of gaps in diagnosis, medical researchers said at a Winnipeg conference Thursday.
Dr. Sterling Clarren, scientific director of the Canada Northwest FASD Research Network, said children are diagnosed through a host of psychological tests that don't necessarily reflect their level of impairment.
A brain scan of an alcohol-exposed child appears normal, but FASD children may have a myriad of behaviour problems, including hyperactivity and difficulty organizing.
Clarren said there are no separate diagnoses for mild or severe FASD -- compared to other disorders like autism, where a high-functioning child could be diagnosed with Asperger syndrome. That gap has left many FASD children struggling, since the diagnosis doesn't always lead to children getting the proper supports they need in school or at home.
Clarren is one of about 100 researchers from across Western Canada meeting in Winnipeg for the first ever Brain Summit to establish better recommendations on how to diagnose FASD.
"It's not working for us," Clarren said Thursday. "We don't have a good scale for how bad off people are."
Medical professionals, including pediatricians, psychologists, doctors and occupational therapists are working together to establish a simple way to diagnose a complicated problem.
Clarren said he hopes researchers can identify flaws in the system -- including racism, sexism, and classism -- and figure out a concrete way to address them.
In Winnipeg, FASD diagnoses are made through the Clinic for Alcohol and Drug Exposed Children at Children's Hospital. The clinic diagnoses about 200 youth with FASD every year -- the tip of the iceberg, according to researchers.
Researchers estimate that one to three babies out of 1,000 have been exposed to alcohol, but diagnoses are often delayed or missed entirely.
However, Clarren noted the prevalence estimates are from 20-year-old U.S. data. One study in northeastern Manitoba found the incidence of FASD was about seven of every 1,000 births.
An estimated 90,000 people have FASD in western Canada.
Part of the problem, Clarren said, is there is an inherent barrier to diagnosing the disorder because the child's mother usually feels guilty.
Public campaigns that focus on abstinence from alcohol during pregnancy don't always reach high-risk women who may have substance abuse problems, and a mother may be initially reluctant to admit she drank alcohol during pregnancy.
Dr. Jonathan Down said part of the solution is making FASD part of the core curriculum for family medicine, nursing, education and law. Currently, FASD is considered more of a specialty field, despite the fact that most physicians and educators will encounter FASD children during their careers.
Children with FASD have a higher rate of mental health disorders, including depression, which makes diagnosis more complicated.
Saskatchewan psychologist Dr. Jo Nanson said few resources are devoted to diagnosing FASD because it typically affects a marginalized population -- compared to autism, where middle-class parents have pushed for top-of-the-line tests. "Children with autism get hugely expensive tests."
Clarren said he hopes the summit can act as a "tipping point" to argue for more FASD resources across the country and better communication between fields.
"It's clinical guesswork," Clarren said. "But the more we look, the more we find."
PREVIOUS
