What is FASD?
Fetal Alcohol Spectrum Disorder (FASD) is an important health issue in Canada. The term Fetal Alcohol Spectrum Disorder describes the range of effects that can occur in infants, children, youth or adults exposed to alcohol while in the womb. You might also hear phrases like prenatal exposure to alcohol, exposure to alcohol before birth or hear FASD described as occurring when a mother drinks while pregnant.
When a woman drinks alcohol while pregnant, her fetus is exposed directly to alcohol through her bloodstream. Alcohol can interfere with growth and development of all fetal body systems. The developing brain and central nervous system (CNS) are especially at risk to the harms of alcohol. In addition, because the brain and CNS develop during the entire nine months of pregnancy, the harm can happen over an extended time.
FASD is called a spectrum disorder because of the different effects and the different diagnoses within the spectrum. The most common diagnoses are:
- Fetal Alcohol Syndrome (FAS)
- Partial Fetal Alcohol Syndrome (pFAS)
- Alcohol-Related Neurodevelopmental Disorder (ARND)
- Alcohol-Retlated Birth Defects (ARBD)
These diagnoses include mild to severe disabilities. The disabilities can be a mix of cognitive (thinking), behavioural (actions), physical (body or health) or sensory (vision, touch, hearing) disabilities. Disabilities caused by direct exposure to alcohol in the womb are called primary disabilities. They are present from birth, permanent and are different for everyone.
How Common is FASD?
Even though alcohol use is common, we do not fully understand the costs, both personal and to the community, of alcohol misuse. When learning about the risks of alcohol use and FASD most people want to know what the scope of the problem is. They want to know the rates of FASD. We do not have national statistics on the rates of FASD in Canada although the Public Health Agency of Canada suggests that 9 in 1000 births are affected. Another way to understand this is that up to 300,000 people are living with FASD in our country (PHAC, 2010) (PHAC, 2005).
FASD is a Lifelong Disability
FASD is a disability that lasts through the entire lifespan. The primary disabilities linked with FASD are permanent. The damage caused to the brain does not lessen or improve, even as the person gets older. However, their behaviour may change with support, effective strategies and improved understanding.
FASD is Mostly Invisible
Some primary disabilities like facial characteristics, poor growth or obvious changes in brain functioning are visible in people affected by FASD. For most individuals, FASD is a disability that is hidden from others. At birth and throughout life it is often hard to see the range of permanent impairments caused by prenatal alcohol exposure.
Because we cannot see the physical changes to the brain or the changes in brain functioning, FASD is called an invisible disability. What is most problematic is that the invisibility of FASD creates a barrier to acceptance and understanding. As a result, children, youth and adults with FASD do not get the support they need.
FASD is a Brain-Based Disability with Behavioural Symptoms
Even though alcohol can permanently damage the developing cells of every body system, the human brain is the organ most sensitive to the effects of alcohol exposure. Much of the injury linked with FASD occurs in the central nervous system which is comprised of the brain and spinal cord. Keep in mind that the brain develops throughout the entire pregnancy and is vulnerable to ongoing damage. The resulting physical changes and changes in brain functioning make FASD a brain-based physical disability. While we cannot see the physical changes to the structure, size or appearance of the brain we can see the permanent changes in behaviour. This wide assortment of behavioural signs and symptoms serves as evidence of prenatal alcohol exposure and is sometimes referred to as the neurobehavioural characteristics of FASD. The term neurobehavioural means that the injuries to the brain (changes in structure and function) are reflected in visible actions and behaviours (Malbin, 2006) and are often what we know about, and how we describe, FASD.
FASD is a Family and Community Issue
FASD is not just an individual experience it is also a family and community concern. FASD not only influences the child, youth or adult affected by exposure to alcohol in the womb but mom, dad, other family members, class mates, teachers, neighbours, coworkers and the community as a whole. Since FASD influences each one of us, increased awareness and understanding of FASD at a community level is critical. With knowledge, community members can make a positive difference to individuals and families living with FASD.
Families, whether birth, foster, adoptive or extended will have a unique experience. All families need the understanding of others. Most will also need additional services from systems of social support and community organizations. Families benefit when they receive both formal and informal support with feelings of loss, grief or disappointment. Siblings, grandparents and extended family members may need help to understand FASD and understand how they