Fetal Alcohol Spectrum Disorders (FASD) affect approximately 4 per cent of Canadians—double the prevalence of autism spectrum disorder. Yet, this condition remains largely under-recognized and, in many cases, undiagnosed. Many of us understand that alcohol should be avoided during pregnancy, but the full spectrum of physical, behavioural and cognitive impairments often goes unrecognized.

Since September marks FASD Awareness Month, it is the perfect time to learn more about this condition and its profound impact. We spoke with Dr. Joanne Weinberg to learn more.

Dr. Weinberg is renowned for her research on prenatal alcohol exposure, though her involvement in the field was a fortunate accident. When she was a graduate student examining how early life adversity affects the development of the stress system, a discussion with a colleague led her to some of the earliest studies on FASD.

“I started reading about FASD and I just became fascinated by it,” she recalls.

The idea that alcohol could have such profound effects on fetal development sparked a passion that would shape the course of her research career.

 

History of FASD Research

Although evidence of prenatal alcohol exposure’s harmful effects existed as early as the 1600s and scientific studies appeared from 1899 on, it was not until 1973 that Fetal Alcohol Syndrome (FAS) was clearly defined and recognized in major medical journals. These early studies highlighted unique facial features, growth deficits and developmental issues in children . These early findings challenged the common belief that alcohol was safe, leading to skepticism in the medical community and the public.

“People said, ‘How can that be? Everyone drinks. It can’t be true. It must be malnutrition. It must be other drugs. It must be something else. It can’t be alcohol,’” Dr. Weinberg describes.

Many clinical studies followed the 1973 publications, providing further evidence of alcohol’s adverse effects. Importantly, studies using animal models allowed researchers to pinpoint the effects of alcohol on development while controlling for factors such as malnutrition, other drugs, environment and genetics. These studies not only provided the critical evidence that prenatal alcohol exposure results in outcomes consistent with clinical findings of FAS, including the distinctive facial features such as a thinner upper lip, a smooth philtrum (the groove between the nose and lip), and small eye openings, but also provided insights into key factors and mechanisms underlying alcohol’s harmful effects.

What are the key characteristics of FASD?

Both clinical and animal model studies demonstrate that alcohol exposure disrupts fetal development across all organ systems, leading to a range of structural, functional and behavioural issues.

“You won’t see the distinct facial features unless alcohol is present when the face is forming,” Dr. Weinberg explains. “However, the facial features are only the tip of the iceberg. The majority of affected individuals do not have these distinct facial features, yet still face significant challenges that often go unnoticed.”

The effects of alcohol can go far beyond the brain. Every organ system can be affected, leading individuals with FASD to experience more severe health issues, including problems with the heart, kidneys and bones, as well as vision and hearing impairments. Indeed, adults with FASD have emphasized that FASD is not a disorder involving only the brain and behavior but rather is a “whole body” disorder.

Other characteristics of FASD that may develop over time include, but are not limited to:

  • Behavioural disabilities such as hyperactivity, impulsivity, social difficulty, troubles with mood regulation and disordered sleep.
  • Cognitive disabilities include poor memory, learning problems, intellectual disability or low IQ, language delays, slower cognitive pace, and trouble with abstract thinking, such as math.
  • Sensory disabilities such as heightened reactivity to stimuli, sensory seeking and avoidant behaviours, unusually high or low activity level and disordered behaviour.

Today, these symptoms are included in the Diagnostic and Statistical Manual of Mental Illnesses, a manual for classifying mental disorders, for diagnosing Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE). While including ND-PAE is a significant step towards accurate diagnosis and treatment, the journey is far from over.

Most neurodevelopmental disorders do not have specific tests for diagnosis. FASD includes several diagnoses based on clusters of symptoms, and diagnosing the condition can be particularly challenging when facial abnormalities are absent. This underscores the need for research to improve our understanding and develop more effective diagnostic tools, including potential biomarkers, to better detect and treat FASD.

The importance of FASD research

In the Weinberg lab, researchers are exploring the physiological impacts of alcohol, focusing on its effects on hormones, immune function and overall health. Their work explores the mechanisms behind alcohol’s effects, the increased health risks associated with FASD, and the search for novel biomarkers. Notably, they have found unique human epigenetic and immune profiles linked to FASD.

“If we had biomarkers that would help tremendously in diagnosis,” Dr. Weinberg emphasizes. Work in this area is in the early stages but some promising findings provide hope that the path to diagnosis will become clearer and more accessible.

While it’s clear today that alcohol should be avoided during pregnancy, the harmful effects can occur even before a woman realizes that she’s pregnant. In 2019, 30.5 per cent of Canadian women of reproductive age reported weekly alcohol use, with 18.5 per cent reporting heavy alcohol consumption. Given that approximately 42 per cent of pregnancies are unplanned, prevalent alcohol use may inadvertently contribute to the rise in FASD cases. Currently, experts say there is no known safe amount of alcohol that can be consumed during pregnancy.

As we continue to unravel the complexities of FASD through research and public awareness, it’s important to remember that addressing this issue requires a collective effort—from reducing stigma to advancing scientific understanding.

“We need to provide services for these children, including individualized education programs, special education, improved diagnosis, better training of medical and other professionals, and increased awareness overall,” advises Dr. Weinberg.

FASD affects not just individuals, but their families, educators and the wider community. Everyone plays a part in creating a more supportive society and promoting better health. Learn more about how you can contribute to positive change for FASD.