International FASD Awareness Day
Patricia Kasper, MA MTh, Training Services, LLC
Fetal Alcohol Spectrum Disorder, or FASD, is a much larger problem than anyone wants to admit. Chances are that you know several people who have never been diagnosed, yet nonetheless have been impacted by prenatal exposure to alcohol. Prior to the lockdowns necessitated by the Covid-19 pandemic, according to research by Dr. May in 2017, a conservative estimate is that 1 in 20 people are impacted. Since then? With alcohol sales soaring 20% in the first six months of the pandemic to $41 billion, and remaining at that rate ever since… the rate of FASDs is also going to soar. And yet, 90% of cases are un- or mis-diagnosed. Why? Because there are so few diagnostic centers available, and those that exist rarely diagnose adults. And because FASDs are largely invisible to the eye; only 10% of those with an FASD have the characteristic facial features (small eyes, elongated and flat space between the nose and upper lip, and extremely thin upper lip). Without a visible reason to suspect a brain injury is causing odd or unacceptable behavior, those with FASDs get blamed and shamed for doing things, or failing to do things, as expected of them. Brain injury, the result of prenatal exposure to alcohol, affects the way the brain, and therefore all of the body, works. Behaviors are generally the only clue that something is amiss. Therefore, FASDs are invisible physical disabilities with behavioral symptoms. FASD is a spectrum of related disorders, so no two individuals have the same challenges, or the same strengths. And these challenges do not resolve when a child becomes an adult. FASD is a lifelong disability for which the individual needs the support of a village – family, schools, mental health, social services, and more. It is important to note that FASD is the leading cause of developmental and learning disabilities in the world.
However, across all spectrums of our society, we have been taught that all behavior is intentional, either to gain a reward or avoid a negative consequence. It all too often goes unrecognized that something most of us take for granted can be extremely challenging for someone else. Our society targets behavior for change without considering the whys, or what the obstacles are for someone to succeed in doing anything. Supporting someone with a brain injury by putting accommodations into place to support them (whether caused by a car accident, sport injury or prenatal exposure to alcohol) is equally ethical, valid and needed as supporting those who are blind, lame or with any other visible disability. The issue is that circuits in the brain are damaged, disorganized or missing. This results in cognitive and behavioral struggles that to most of the world looks like “bad behavior.” These “bad behaviors” bring a child, youth or adult to the attention of school administrators, mental health, social services and the law. But all too often, those professionals, and I was one of them, are ill equipped to provide effective help because they have not yet learned to look beyond the behavior which is objectionable to what is causing the behavior – a brain that works differently. So, more often than not, the struggles, frustration and pain continues (for all parties involved), despite everyone’s best efforts. No one knew what they didn’t know until they finally learned it. That goes for ALL of us, regardless of our level of education, our vocation, our zip code, or any other variable.
With regard to social services, the percentage of youth in “the system” is not the 5% we see in the general population, but 80%, according to that same 2017 study by Dr. May. Stable placement is the #1 mitigating factor that can improve outcomes for someone with an FASD. But these children tend to have poorer outcomes, as they tend to get bounced from home to home to home due to what looks like their “bad behavior.” Again, only 10% of people with an FASD have the facial features that cue people to look for a reason other than “choice” for a child’s behavior. That means that 90% of those with an FASD risk worse outcomes, such as higher rates of school dropout, the inability to get or keep a job, homelessness, mental health issues, higher rates of suicide and repeated incarcerations. 30% of the homeless in California are impacted by FASD. One reason for higher rates of being in trouble with the law is because people with an FASD so strongly desire to please others, and are easily deceived into doing something because they are so suggestible. Those with FASD also struggle with impulsivity and the inability to recognize danger. Another reason is because of their lifelong (for however old they are) history of being marginalized, blamed, and shamed – which understandably leads to anger issues. A prime example of what can happen when it all goes terribly wrong – when no one recognizes a child’s chronic cognitive struggles into adulthood – is Adam Lanza, who is currently on trial in Florida for a school shooting. Having a brain that is “wired” differently was never identified, until after the unspeakable tragedy that unfolded not so very long ago. Our prisons are full of Adam Lanzas.
But outcomes like this are preventable! We must stop to ask ourselves, “What if the way his/her brain works has something to do with the behavior I am seeing? What is hard for this person?” This is the first step to creating accommodations and improving outcomes. It is not enough for parents to recognize their child has special needs; so too must educators and other involved professionals. People with brain injuries need a village approach in order to succeed – tailored accommodations targeted to the brain tasks that are challenging. Many accommodations are amazingly simple, such as allowing someone more time to process what they are hearing, to process the words being used, to formulate answers etc. Other simple approaches are to provide only one step of an instruction at a time, or show them rather than tell them.
During FASD Awareness Month, we can celebrate that progress is at long last being made. Locally, the Kern County Board of Supervisors proclaimed Sept 9 as FASD Awareness Day, joining in the international commemoration of this. On a state level, there is a bill on our Governor’s desk (SB1016), awaiting his signature that codifies FASD as a PHYSICAL HEALTH IMPAIRMENT, rather than an emotional disturbance, and mandates that students with an FASD be qualified for special education based on their physical disability. Nationally, our senators and congressional representatives are learning about FASD, as advocates talk with them about the FASD Respect Act, which will NATIONALLY codify FASD as a disability. There is hope. With the numbers of those prenatally exposed to alcohol expected to rise due to the increase in those who have used alcohol to “manage” pandemic stress, we owe it to the next generation to do better by our youth.
We are all diamonds in the rough. :-)