Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects which can occur in individuals whose mother drank alcohol during pregnancy. It is an organic, permanent brain-based disability which is not curable, has lifelong implications and is the leading cause of intellectual disabilities. FASD is known as the “invisible disability” as most people with FASD don’t have discernible facial abnormalities. The real disability lies in damage to the brain and central nervous system. The lack of outward signs may cause people to misinterpret common behaviors associated with FASD and assume the individual’s actions are willful in nature resulting in punishment. This leads to the frustration of being misunderstood which evolves in maladaptive coping strategies on the part of the individual with FASD (1).
FASD is more prevalent than previously thought. A recent study found the number of students in the United States who have an FASD may be as high as 1 in 20 (2). Individuals affected by FASD may have lifelong physical, mental, behavioral, and learning disabilities and struggle with working memory, self-regulation, understanding consequences and social cues and other activities of daily living. Since FASD is a spectrum disorder, each individual will have unique strengths, and challenges.
Under the FASD umbrella there are different types of FASD: Fetal alcohol syndrome (FAS), partial Fetal Alcohol Syndrome (pFAS), alcohol related birth defects (ARBD) alcohol-related neurodevelopmental disorder (ARND) and ND-PAE which stands for neurodevelopmental disorder associated with prenatal alcohol exposure. ND-PAE is the only FASD listed in the DSM-5 (https://pubs.niaaa.nih.gov/publications/FASDFactsheet/FASD.pdf.)
Cause of FASD
To raise awareness of FASD we need to educate ourselves on its cause and the resulting behaviors and symptoms. Alcohol is a teratogen capable of interfering with the development of a fetus, causing a range of effects from physical, mental, behavioral, and learning disabilities. Of all the substances of abuse, alcohol produces the most serious neurobehavioral effects to the fetus and is the leading known cause of mental retardation and developmental disabilities worldwide (4). During pregnancy, the placenta is the source of nutrition for the fetus. As the mother consumes alcohol, it travels to the placenta via the umbilical cord reaching the developing fetus. Prenatal Alcohol Exposure (PAE) affects the brain, central nervous system, heart, eyes, legs, arms, and all developing systems. Continued use of alcohol throughout pregnancy causes cumulative effects delaying normal growth of the fetus. While all developing organs are impacted by PAE the brain is most adversely affected. Damage to the prefrontal cortex is common and may result in executive functioning deficits. This includes cause and effect reasoning, adaptability, self-regulation, ability to plan ahead, memory deficits, impulsivity, etc. As different areas of the brain are harmed by PAE, this will affect different areas of learning (5).
FASD Primary and Secondary Disabilities
Fetal Alcohol Spectrum Disorder (FASD) is a neurologically brain-based birth defect. The damage done to the brain because of prenatal alcohol exposure is considered a primary disability and cannot be repaired. Primary disabilities of FASD may be the result of damage to the prefrontal cortex of the brain. The prefrontal cortex is the “ command center” of the brain and damage results in poor executive functioning, memory problems, impaired judgment, and other effects.
Secondary characteristics (adverse outcomes) can be prevented with proper interventions and understanding of the behaviors associated with FASD (https://www.proofalliance.org/2014/05/understanding-the-behaviors-of-children-and-adolescents-with-fetal-alcohol-spectrum-disorders-fasd/).
Providing the proper accommodations and environment will involve the ability to link the source of behaviors to the damage done to the brain because of prenatal alcohol exposure rather than willful acts. Interventions which focus on changing the behavior assume actions are intentional or willful. When thinking is reframed and behaviors are understood to be a result of differences in the brain, then the goal is on changing expectations and the environment to accommodate and avoid frustrations (5). This is the first step in maintaining a neurobehavioral approach and trying differently rather than harder (5).
FASD and Co-Occurring Disorders
It is understandable as to why FASD may be one of the most misunderstood and misdiagnosed disorders in the neurodevelopmental spectrum. A 2016 study found there were 428 co-occurring conditions associated with FASD (6). Ninety percent of individuals with FASD had co-occurring problems with conduct (6). Eight in ten had issues relating to understanding or expressive language and seven in ten had cognitive disorders (6). FASD may have overlapping behavior characteristics with: (https://www.proofalliance.org/wp-content/uploads/2015/09/Overlapping-Characteristics-4-29-2016.pdf)
Every child with fetal alcohol spectrum disorder has unique strengths and abilities with the potential to live a fulfilling and successful life. Parents/caregivers are the child’s primary supporter at home, within the school system and with medical and mental health professionals. Parenting styles that may work for a neurotypical child may not be affective for the child with a brain-based disability. It is necessary to try different approaches to managing behaviors by changing paradigms and adjusting expectations and the environment surrounding the child with FASD.
Protective factors for both FAS and FASD include living in a stable, nurturing environment, early diagnosis, access to services and absence of violence (1). To provide these protective factors we must become educated on the behaviors, characteristics and symptoms related to the organic brain damage associated with FASD. Each year it is estimated that worldwide over 630,000 babies are born with FASD (7). The cost for FASD exceeds autism and adult diabetes yet most countries allocate less than one percent to prevention and even less to intervention (7). Early intervention will result in appropriate resources, supports and treatment options and drastically improve outcomes for those with FASD. People with FASD are resilient and have many strengths. With adequate supports, adverse outcomes can be minimized or avoided. Through education and advocacy, we can raise awareness among parents, caregivers, educators, law makers and providers of this “invisible disability”.
Together we can make a difference.