Blog post: Fetal Alcohol Spectrum Disorder (FASD): The Need to Build More Awareness and Support

Written by Brett Lambert, ESPC Research Officer

Did you know that 1 in 25 people (4%) in Canada live with Fetal Alcohol Spectrum Disorder (FASD)? This translates to 1.5 million people (Flannigan, Unsworth, and Harding, 2018). That means it is possible to have one student in every classroom who lives with FASD. FASD is one of the most common neurodevelopmental disabilities in North America. It impacts more people in Canada than autism spectrum disorder, cerebral palsy, and Down syndrome combined. These numbers are considered a conservative estimate, and it is possible the rate of prevalence could be even higher because diagnosis can be challenging.

The month of September is Fetal Alcohol Spectrum Disorder Awareness Month, which aims to bring about more understanding of a commonly known but not very well understood disorder that affects more people than the general public might think.

In an effort to help further this awareness and bring about more understanding, the Edmonton Social Planning Council recently hosted a Lunch & Learn event on September 17 on this very topic where Brittany Durant, Program Manager for FASD Programs from Catholic Social Services spoke at length about FASD and how to better support individuals who live with the disorder.

FASD is defined as the impact on the brain and body of individuals who were prenatally exposed to alcohol as a fetus while in the womb of a pregnant person. It is a lifelong disability and persons who have the disorder experience some degree of challenges in their daily living and need support with motor skills, physical health, learning, memory, attention, emotional regulation, and social skills to reach their full potential. Since the disorder exists on a spectrum, the manifestations of FASD can be unique to each individual and can present differently for each person (CanFASD, n.d.-a).

The impact of prenatal alcohol exposure can also influenced by a number of factors, which includes the age of the pregnant person, the amount of alcohol consumed, pattern and timing of alcohol exposure, general health and nutrition of the pregnant person, the level of stress or trauma of the pregnant person, whether the pregnant person also smoked or used other drugs, and the genetics of the parents’ and epigenetic changes (Guerri et al., 2009).

Although the disorder is considered a life-long disability and there is no “cure,” individuals with FASD can still live successful lives with access to the appropriate level of support and services.

Barriers to Supports for Persons with FASD

Although the potential to lead a thriving and successful life is possible for individuals with FASD, the sad reality is that too many lack access to consistent systematic supports. As a result, this means that 90% of individuals with FASD will experience mental health issues and they are 20 times more likely to struggle with substance use than the general population (CanFASD, n.d.-b).

They are also at risk of experiencing homelessness, which could range from hidden homelessness like couch surfing or more visible homelessness like sleeping rough on the streets (Poth et al., 2018).

Persons with FASD can experience memory and cognitive challenges that can make tasks like paying rent on time difficult or can impact their ability to properly perform tasks at a job. This can make finding a place to stay a challenge too.

Landlords who do not understand the disorder may hold negative stereotypes and not want to rent to people with FASD. These issues are compounded for individuals who receive disability payment as their primary source of income as they have systemically been denied housing. (Bibr et al., 2024).

According to the Canada FASD Research Network, 80% of youth and young adults with FASD have had difficulty with sustaining independent housing. In addition, many housing models do not take into account the experiences of those with FASD and have limited capacity through staff training and resources to address FASD support and needs (Bibr et al, 2024).

More Government Action is Needed

Governments need to take more action to give FASD the recognition it deserves so that more robust support is in place.

In the Canadian Senate, Bill S-253 would put forward a National FASD Framework that seeks to establish a systemic and coordinated effort to address proper support for FASD. Current supports are scattered and inconsistent across Canada and the bill would establish a development plan for a framework that would address that. In addition to consulting caregivers, self-advocates, and representatives of provincial and territorial governments, the bill also seeks to address the training needs of professionals working with people with FASD, which would be an important step forward for improving the lives of individuals with FASD (CanFASD, n.d.-c).

Change Also Begins at the Individual Level

Just as governments need to lay the foundation for better support of persons with FASD, change also needs to happen at the individual level. Promoting a better understanding, awareness, and acceptance will help build a society where more people get diagnosed and receive the supports necessary to thrive.

While supports for individuals currently living with FASD is important, education on prevention is also important. Making sure expectant parents know that there is no safe level of alcohol consumption during pregnancy is necessary. In addition, people also need to be mindful about alcohol consumption in the period leading up to pregnancy. Since 61% of all pregnancies are unplanned, responsible alcohol use in the lead-up to pregnancy also needs to be considered.

References

Bibr, C.O., J. Pei, K.D. Harding (2024). People with Fetal Alcohol Spectrum Disorder face a heightened risk of homelessness. https://theconversation.com/people-with-fetal-alcohol-spectrum-disorder-face-a-heightened-risk-of-homelessness-237846

CanFASD [n.d.-a]. Basic Information. https://canfasd.ca/topics/basic-information/

CanFASD [n.a.-b]. What is FASD? https://canfasd.ca/what-is-fasd/

CanFASD [n.d.-c]. National FASD Framework. https://canfasd.ca/national-fasd-framework/

Flannigan, K., K. Unsworth, and K. Harding (2018). The Prevalence of Fetal Alcohol Spectrum Disorder. https://canfasd.ca/wp-content/uploads/publications/Prevalence-1-Issue-Paper-FINAL.pdf

Guerri, C., A. Bazinet, and E.P. Riley (2009). Foetal Alcohol Spectrum Disorders and alterations in brain and behaviour. Alcohol Alcohol, 2009. 44(2): p. 108 – 114.

Poth, C-A, E. Carlson, J. Pei, V. Joly (2018). Creating Intersections: A Systematic and Person-Centered Harmonizing Framework for Housing Individuals with Fetal Alcohol Spectrum Disorder. https://homelesshub.ca/resource/creating-intersections-systematic-and-person-centered-harmonizing-framework-housing-individuals-fetal-alcohol-spectrum-disorder/