FASD: The Invisible Disability

The information for Day 90 of 99 Days to FASDay is from the issue paper The Prevalence of Fetal Alcohol Spectrum Disorder published this month by The Canada FASD Research Network (CanFASD).

Since Fetal Alcohol Syndrome was first defined in North America in the 1970s, researchers have been working to determine prevalence rates of this disability. The social and economic impacts of Fetal Alcohol Spectrum Disorder (FASD) on families and the broader community are profound, thus understanding the scope of the issue is critical. Over the years, researchers have used various methodologies and examined a range of geographical regions and populations around the world in their efforts to establish prevalence rates. Because of these differing approaches, FASD prevalence findings have not always been consistent. The purpose of this issue paper is to share the most up-to-date research findings, and to provide clarity around the question, “How many people have FASD?”

Approaches to Establishing Prevalence Rates

FASD prevalence is inherently difficult to measure, due to challenges with recognition, screening, and diagnosis. The “invisibility” of FASD, as well as factors related to the social determinants of health that are often at play for individuals with FASD, confound our ability to establish accurate rates. Because symptoms of FASD are often complex and may not manifest fully until later in life, individuals with FASD may not come to the attention of service providers until the school years or beyond. As well, because of the stigma and shame attached to the disability, prenatal alcohol exposure (PAE) is likely underreported. Because of these issues, many individuals with FASD may be incorrectly diagnosed with another disability or missed altogether. Therefore, estimates across all studies are believed to be conservative.

Based on evidence in two recent studies reporting conservative rates of 1-4% and 2-3%, our current best estimate for the prevalence of FASD in the general Canadian population is 4%.

To build on this important Canadian work, researchers from CanFASD, the Centre for Addiction and Mental Health, and Canadian Centre on Substance Use and Addiction are currently embarking on a project funded by the Public Health Agency of Canada to develop a cross-jurisdiction surveillance system to monitor prevalence rates of both FASD and PAE. This project is a collaboration between researchers in three provinces and two territories and relies on multiple existing data sources. It will provide much needed insight into the scope and impact of FASD at a national level.

Research Across the World

With increased worldwide attention to the issue of FASD, researchers around the globe have begun to examine prevalence in their local regions. Estimates vary widely across countries, but several worldwide reviews of research in the general population have recently been conducted. Findings of these studies indicate a global FASD prevalence of 0.8% with the highest rates in South Africa (11%) and the lowest rates in eastern Mediterranean countries (0.01%)

FASD is a prevalent disorder, vastly outnumbering other common developmental disabilities; however, FASD comes with relatively little public recognition or understanding. Recent research points to a much higher rate of FASD than was initially estimated, and with improved methods of detection, these numbers continue to rise. Although FASD prevalence rates vary widely across countries and populations, and are considered to be conservative, the current best estimate in the general Canadian population is 4%. There are significantly higher rates in special groups, such as those involved in the child welfare and justice systems. FASD prevalence research is important not only for understanding the scale of the issue in our communities, but also for making decisions about funding and resource allocation, and for monitoring the effectiveness of prevention efforts. As well, with improved knowledge about special populations that may be at a particularly high risk for PAE or FASD, intervention efforts may be targeted to reduce the number of new cases of FASD and to support healthy outcomes for individuals and families who are already affected.

CanFASD goes on to make recommendations which you can find by visiting the Issue Paper (which is more detailed than the highlights above and cites sources). Link at the top of the page.

The research and work coming from CanFASD over the last few years are impressive. In Canada, we have research to back up what we already suspected. However, as this article states, and as many of us who are parents, caregivers, or people with FASD, we know that Fetal Alcohol Spectrum Disorder remains largely unrecognized, barely supported and grossly underfunded. This needs to change.

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