FETAL ALCOHOL SYNDROME SOMETIMES MISDIAGNOSED AND UNDER-REPORTED DUE TO STIGMAS AROUND DRINKING
Fetal Alcohol Syndrome Disorder (FASD)—caused by fetal exposure to alcohol and resulting in changes in cognitive, behavioural and adaptive function—is much more prevalent than previously thought. A major new study out of the US, as well as a subsequent Canadian study, show FASD affects between one and five per cent of children. That means FASD is more common than Down syndrome and as common or more common than autism. Dr. Joanne Weinberg, a neuroscientist who studies FASD, says the new prevalence estimates are highly significant.
“It’s very important for the research and clinical community to understand how prevalent FASD is. Once you’re more aware, there’s a chance, in the clinical setting, that you will diagnose it more frequently and accurately or at least ask about alcohol exposure,” says Weinberg, “You might be able to help these kids and their families more effectively.”
Unfortunately, just like mental health issues, Weinberg says there is a stigma around alcohol use that can get in the way of recognizing FASD.
“With a condition like autism or diabetes it’s clearly seen as nobody’s fault. Families have support networks and advocacy. But with FASD there’s a societal stigma; that may be part of why it’s not as well publicized or understood.”
Weinberg says for some medical practitioners, alcohol consumption is an uncomfortable topic and is sometimes avoided when speaking with pregnant women or new parents. This can have consequences.
“If a health care provider doesn’t know the maternal history of drinking and doesn’t observe the textbook features of Fetal Alcohol Syndrome (facial anomalies, growth retardation, and central nervous system alterations) the child may be misdiagnosed with ADHD or other disorders.” Weinberg says the treatments designed for disorders such as ADHD may not work as well for kids who have FASD.
“These children deserve the same support and services as any other child with a neuro-development disability—and sometimes it’s not forthcoming.”
Weinberg, who won a prestigious award last year for her work in the FASD field, is studying how fetal exposure to alcohol impacts lifelong immunity.
Weinberg’s research was sparked by her basic science studies, and by a health survey conducted by a local group of adults with FASD, led by Myles Himmelreich, C.J. Lutke, and Emily Travis. The survey found a much higher rate of health issues reported amongst people with FASD than same-age peers in the general population. These issues ranged from autoimmune disorders to cardiovascular disease to endocrine disorders.
“Very little is known about what happens in adults, and even less is known about long-term health problems in adults with FASD. The majority of studies focus on children. We hope to contribute to research and ultimately to find better treatment interventions.”
Weinberg and her co-investigators Drs. Tammy Bodnar and Charlis Raineki, as well as Drs. Tim Oberlander and Chris Loock, secured funding from the National Institutes of Health/National Institute on Alcohol and Alcoholism, as part of the collaborative initiative on FASD, and are currently recruiting participants.
A HIDDEN PROBLEM THAT CUTS ACROSS CLASS
The US prevalence study used a technique called active case ascertainment. Researchers visited hundreds of first grade classrooms in four economically different communities to look for the condition and interview families. More than 6,000 children were selected. Of the 222 children the researchers found to have FASD, only two had been previously diagnosed.
Weinberg says it’s important to note that the study looked at kids from many different backgrounds. “Alcohol doesn’t recognize socio-economic differences. Alcohol can affect the fetus no matter what the mother’s background. There are cases from all sectors of society. In higher income areas, FASD might be missed due to biases about what kinds of societal groups are more at risk.”
Weinberg says talking more openly about alcohol and looking at addiction as a disorder and not as a moral issue will help break the stigma around FASD. As for public health messaging around drinking during pregnancy, Weinberg says we are doing better but there’s room for improvement.
“Women are still drinking during pregnancy. We need to give them and their partners the facts. The bottom line is there’s no safe level of drinking during pregnancy. The safest thing is not to drink.”