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FASD Awareness Day
September 9, 2017
The first published literature that linked prenatal alcohol use with birth defects was in France, in 1968, by Dr. Paul Lemoine. In 1973, researchers at the University of Washington published their findings regarding a group of children who shared uncommon physical features and developmental delay. These children all had mothers who had consumed alcohol in pregnancy. The term “Fetal Alcohol Syndrome” (FAS) was created to describe the patterns observed in these children.
Today, Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that describes the range of effects that can occur in an individual who was prenatally exposed to alcohol, and includes FAS. These effects can include lifelong physical, mental, behavioural difficulties, and learning disabilities. Depending on the amount and the timing of alcohol exposure, a minority of infants exposed will also develop a characteristic pattern of facial features, and some will have a growth deficiency. However, those effects are relatively rare and have little impact on day-to-day function.
Decades ago, the facial features of FAS received a lot of attention in the press. The presence or absence of facial features depends on whether alcohol was consumed in a very narrow window of time during pregnancy. It does NOT reflect the degree of brain disorder. The vast majority of people with FASD are not visibly different; you cannot see FASD. Although in a very small percentage of people the face may look different, the important fact is that in all individuals with FASD, the function of the brain is permanently affected.
Alcohol exposure during pregnancy results in changes to the developing brain at neurochemical and structural levels. Often, these changes are not detected until a child reaches early or middle school-age when difficulties at school and at home become increasingly problematic. These challenges can include problems in social communication and attention, motor and sensory problems, memory, and difficulty learning from consequences. As an individual grows, they are also at increased risk for depression, anxiety and other mental health conditions.
Scientific evidence has conclusively shown that alcohol consumption during pregnancy can cause fetal harm. There is insufficient scientific evidence to define any threshold for safe low-level drinking during pregnancy or when planning to become pregnant. The life-long damage to the brain is the most common and serious result from prenatal exposure to alcohol and can occur at any time during a pregnancy. The safest choice for a woman who is pregnant or planning to become pregnant is not to drink alcohol.
A common misconception is that FASD is associated with social, ethnic or cultural background. However, the majority of Canadian women drink alcohol. In a 2004 Canadian Addictions survey, 76.8% of women over 15 years of age reported drinking alcohol within the previous 12-month period. Approximately one half of all pregnancies are unintended. The highest rates of unintended pregnancy occur in women aged 15 – 19 years of age, which is also a population at increased risk for binge drinking.
There are currently no confirmed statistics on the number of people in Canada who have FASD, yet, prenatal alcohol exposure is considered the most common known cause of developmental disability in the western world. Over the years, prevalence rates in the United States have been reported as 1-3 per 1000 live births for the specific diagnosis of FAS, but as high as 1% or even higher for the full spectrum. The latest research on prevalence, conducted in several countries, indicates that these rates are believed to be as high as 5 out of every 100 live births. The indirect and direct costs for supportive needs in health, mental health, social services, and education and negative costs through criminality and criminal justice are estimated to be $4B/year.
Unlike most other birth defects, the diagnosis of FASD is not straightforward. Medical signs are difficult to recognize in newborns, infants and young children. Diagnosis can be delayed or missed entirely, as most of the damage caused by alcohol use during pregnancy cannot be easily quantified until problems arise. Problems caused by prenatal alcohol exposure may not be noticed until children are in school or until the teenage years because this is when those affected by FASD often have significant difficulty meeting societal expectations. FASD is challenging to detect and the diagnostic process relies on an inter-disciplinary team approach. Diagnostic services are not widely available across Canada, especially in rural and remote areas. Many families are reluctant to seek a confirmed diagnosis due to the stigma of addiction.
No two people with FASD will have the same challenges due to the wide variation of alcohol effects on brain development. They are at increased risk for mental health issues, school difficulty, addictions, and difficulties maintaining employment. Some of the more commonly seen challenges include:
- Executive functioning – difficulty with judging, planning, delaying gratification, consequences, organization, impulsivity, memory
- Communication – can be highly verbal, but lack comprehension skills both written
- Neuromotor Defects – impaired balance and coordination
- Sensory Deficits – pain, touch, heat, light
If the above are not appropriately understood and addressed, individuals with FASD are at increased risk for early school failure, involvement with the law, family disruption and homelessness.
Our understanding of FASD is in a period of rapid expansion and change. We are beginning to understand the extent of the global impact of this lifelong disability. Research, and the answers it may provide, is critical for moving this field forward, changing the way we view this brain based disability and lessening its impact on individuals, families and society.