Today’s “lesson” focuses on Fetal Alcohol Syndrome Disorder (FASD), sometimes called Fetal Alcohol Effects (FAE). FASD made it onto my list thanks to interest from a couple of readers who requested I cover it. So thanks, readers, and here we go.
What is FASD?
FASD is called an “umbrella term” for a range of effects, including lifelong disabilities, that befall a baby whose mother drank alcohol while pregnant. Unlike Down Syndrome and cerebral palsy, FASD is not considered a clinical diagnosis. Instead, an individual known to have fetal alcohol syndrome would be diagnosed with such terms as Neurobehavioral Disorder/Alcohol Exposed, Fetal Alcohol Syndrome, Partial FAS, or any number of other terms. This is meant to reflect the “spectrum” nature of FASD, as well as the differing amounts of alcohol exposure an individual may have had in the womb.
About 40,000 babies are born with FASD and diagnosed with a disorder on that spectrum in the U.S. each year. The symptoms are myriad and unique; much like CP and some other disabilities, two people may present with some of the same symptoms but not all of them. The symptoms an individual presents with often depends on his or her specific diagnosis. For example, symptoms are different for partial FAS than they are for “full” Fetal Alcohol Syndrome.
Are there classical features?
Yes and no. Some people present with certain features such as minor facial differences like small eyes or a thin upper lip. Sometimes the facial differences are more noticeable, and sometimes no discernible physical features exist. Some people are born with their height and/or weight below the 10th percentile for their age groups, and continue to have growth issues throughout life. It’s important to note that while these features can be major markers of FASD, it sometimes cannot be proven that the person was exposed to alcohol. The origin of the features may be traced back to something else, or the cause may be unknown.
Does FASD impair functioning or learning?
To some degree, in many cases. According to depts.washington.edu, FASD is “the leading known cause of intellectual disabilities,” and there can be neurological and functioning impairments. A person with FASD may also have trouble with what’s called “adaptive behavior.” However, the manifestation of these effects depends on how much alcohol the person was exposed to, how much brain damage was sustained, and other factors. Intellectual and neurological impairments seem to occur across all forms of diagnosis, but as with other disabilities, the degree of impairment determines a lot about how the individual’s disabilities will be handled.
Many people with FASD are considered to have “invisible disabilities,” sometimes because their disabilities get blamed on something else. For example, a person with FASD, especially a child, may not be able to connect consequences to actions. Especially in childhood, this can be misinterpreted as the child being spoiled or defiant. Thus, some aspects of FASD are overlooked. Advocacy and self-advocacy for people with this condition is crucial. While that’s true for all disabilities, I’d venture to say it’s even more vital for those whose disabilities are “invisible.”
What is life like with FASD?
Again, it would be next to impossible for me to paint you a “typical” portrait, which is why I lean heavily on research. According to No FASD Australia (nofasd.org.au), basic symptoms may include:
-Learning disabilities and/or difficulties (again, others may not connect this to FASD right away)
-Hyperactivity and impulsiveness
-Inability to connect actions to consequences
-Sensory difficulties/issues, such as disliking particularly loud sounds
-Social and developmental delays
Can people with FASD be independent?
As with all disabilities, this depends on the person. Independence may be harder for certain people with FASD because of traits like impulsiveness and other neurobehavioral issues. As with other disabilities, people with FASD are often unfairly stereotyped and labeled. The TAB people around them assume they simply refuse to do or be certain things, when in reality they cannot and will not do or be those things. This often leads people with FASD to experience a constant sense of failure, which may negatively influence their behavior and life trajectory. Some people with FASD live in a state of dependence on family and government; others become impoverished or homeless.
Despite this, the picture need not be so bleak. People with FASD can lead fulfilling lives if those around them are educated regarding what they have and what they need. Remember, many cases of FASD involve “invisible disabilities,” so if you are the loved one of someone with it, you must speak up and teach your loved one to speak up. You have options, such as educations tailored to your loved one and an adult lifestyle that accommodates their needs. For example, many people with FASD use memory prompts and clear schedules to help them get through daily life. Like people with certain other disabilities, people with FASD need and depend on routine. They need a support system made up of people who both recognize their needs and nurture their strengths.
Myths and Facts about FASD:
Myth: If you drank during pregnancy, it is your fault the baby has FASD. If you drink while pregnant your baby will automatically have the disorder.
Truth: It is never advisable to drink while pregnant, simply because we don’t know how much alcohol exposure can trigger FASD. However, if you are the mother of a person with FASD, know it is not your fault. You didn’t know specifically what might happen, and no mother worth her salt ever sets out to purposely harm her baby. Remember too, that the effects of FASD cannot always be traced directly to alcohol. In other words, that one glass of wine you had on New Year’s Eve is probably not the reason your child has an intellectual disability or other issues.
Myth: Adults don’t have FASD/you “outgrow” it.
Truth: This is one myth I wish were nonexistent for all disabilities. You do not outgrow FASD. In my opinion, some people may persist in thinking this because they cannot accept manifestations of FASD in adults that they would write off in children. This is unfair and stifles the individual. Adults have FASD and live with it every day. They also have the chance to be independent, productive, and happy if we let them–so let’s let them.
Myth: People with FASD can’t learn/their ability to learn stops at about fourth grade.
Truth: Learning is tough for a lot of people with FASD, and whether you have a disability or not, fourth grade is notoriously hard. You’re reading the blog of a person who failed fourth grade math. This is because the curriculum and learning styles of most schools change significantly from grade four onward. However, learning doesn’t “plateau” then for kids with FASD or any other kids. Kids with FASD may *appear* to stop progressing, but they just need extra support and perhaps different teaching styles. (This is where advocacy comes in, as does the support of things like IEPs, self-contained classrooms as needed, etc.)
Myth: FASD is an excuse for bad behavior. People with FASD could do better if they tried harder.
Truth: This is another myth that boils my blood, because it reduces the person to some annoying oddity who wants and enjoys his or her disability. Nothing could be further from the truth. It’s not that people with FASD don’t want to behave in a socially appropriate way; sometimes they just cannot do it–the same way a person with CP might never be able to walk or speak clearly. Accurate diagnosis, compassion, and support is needed so much!
Myth: People with FASD cannot maintain relationships because they cannot “behave.”
Truth: No; people with FASD do have family members, friends, and even significant others in their lives who love and understand them. Like all people, those with FASD could always use more relationships. Awareness and acceptance makes that happen.
Myth: People with FASD should not have children because the children will get FASD. Anyway, they can’t raise children.
Truth: There is no genetic link present in FASD, and people with it can raise children with adequate support.
Come back soon, readers; I so enjoy sharing these posts with you. 🙂