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The Invisible Disability…
the misunderstood challenges of Fetal Alcohol Spectrum Disorder.
Authors: Shannon Harris & Diane Magill
Have you ever been frustrated at yourself for not being able to complete a task? What about not being able to complete the same task you just did yesterday? What if all the people around you are using big words… like you are sitting in meeting or job orientation, and can’t follow or understand what you are being asked to do? Would that make you frustrated and angry? Have you ever been uncomfortable in social situations? Have you ever been frustrated and angry that your body just couldn’t do what you wanted it to do? These are challenges that someone diagnosed with Fetal Alcohol Spectrum Disorder may experience every day of their lives.
Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with some or all of the following areas: motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills, to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges. According to the Alberta Government “While there are no statistics on the prevalence of FASD in Canada or Alberta, research estimates that 9 in every 1,000 babies are born with FASD. In Alberta, this means that there are more than 46,000 Albertans with FASD, and an estimated 500 babies are born with the disorder every year. (2018)”.
As said earlier, FASD is caused by prenatal exposure to alcohol which means that the woman drank alcohol during pregnancy. This does not mean in any way that the woman drank during her entire pregnancy or that she even has any kind of addiction to alcohol.
So why do women drink while pregnant? The answer is more complex than you may imagine. Some women may not even be aware that they are pregnant; others may not know that alcohol can harm and affect the fetus; some may have been told or led to believe that it is safe to consume a small amount of alcohol such as a glass of wine periodically during pregnancy; and others may struggle with an addiction to alcohol.
Most symptoms of FASD are based on mental processes and progressive physical limitations, which build over time. Our expectations are based on what we see, not what we know. If the disability cannot be seen, then it must not exist. This misunderstanding and misinformation can lead to further stigmatization for those affected.
Prenatal Alcohol exposure can have a significant impact on communication skills. Expressive language, the ability to express oneself, is often considered a strength and people with an FASD diagnosis can definitely talk the talk. But did you know that receptive language is often impacted? Receptive language is the ability to receive communication from others and process that information. This means that the person may comprehend the information being given to them in the same way that someone who is six years old may process the same information (this level varies for everyone). This results in the inability to walk the walk. The more complex the information and the more words used increases the chance that the person will not understand what is being requested or information being provided. Reading ability can also be affected. Daily living skills can be challenging for someone that has a diagnosis of FASD. What would you expect an eleven year old to do within the home? That is where the person with FASD may be at. The concept of money and time is one of the biggest challenges. What expectations were put on you as an eight year old?
As a community we treat people according to their chronological age… how old they appear to be. But the reality is that people with an FASD diagnosis need a different approach that includes both chronological age and mental capacity to help them be successful. Not only do we need to consider physical age, we need to consider mental age, which is why it is so hard to see this disability.
There is often a feeling a guilt that goes along with having your child diagnosed with a disorder, as well as stigmatization and shame. Why is this important to know? The community as a whole has the responsibility to reduce stigma against mothers and people with FASD. Through the power of understanding and knowledge, we can provide the opportunity for those struggling, to get supports, receive help for themselves and their loved ones and can feel comfortable and confident that their communities will be there to support them.
So, how do we focus on providing the supports for those that have an FASD diagnosis and how do we prevent this from becoming an epidemic? Prevention, Education and Community engagement. Together we can help those affected by FASD to lead full and prosperous lives.
FASD Awareness day was September 9th and we would like to thank all the staff and individuals who participated in these events and activities to support creating greater awareness through our communities.