As a behavior consultant for children, teenagers, and adults with Fetal Alcohol Spectrum Disorders (FASDs), I consult with dozens of families and professionals per year and come into contact with hundreds more through trainings. These families live all over the world, and if there is one commonality between them all, it’s this: they are all desperate for services and receive virtually no support from any system. That is an injustice.
How many people does this affect? A recent study conservatively estimated that FASD prevalence among US children is 5%. [1] Conservatively. That’s 1 in 20 children whose brains (and bodies) have been impacted in some way by exposure to alcohol in the womb. Autism is currently estimated to be 1 in 59 children, or just a little over 1.5% of the population. [2]
So 5% of the population (and their families) are living with the consequences of prenatal exposure to alcohol. These “consequences” typically start showing themselves through learning difficulties and challenging behaviors. Note: people with FASDs often have no outward sign of a disability — you do not have to have “facial features” to have an FASD. In fact, many people with FASDs have normal IQs and can speak well. All of these strengths only contribute to their invisible disability, making finding services even more difficult because they don’t “seem” to need as much support. That is an injustice.
Despite certain strengths, people with FASDs almost-always struggle with processing information quickly, including what is being said verbally. They also typically struggle in many— if not all — areas of executive functioning: attention, impulse control, working memory, abstract thought, planning, adjusting, transitioning, and more.
And so we have a group of people — 5% of the population conservatively — who have an invisible disability, can often speak well, and yet who struggle with critical skills needed for literally every waking moment of the day. And when someone is continually demanded (by parents, by teachers, by friends, by society) to use skills that they don’t have, they begin to respond to that pressure through challenging behaviors, or find various ways to cope.
Many parents (biological or adoptive) do not know their child has an FASD, or they do not know how FASD impacts the brain, and so they do the usual: punish, reward, yell, spank, whatever. None of these work, because none of these address the underlying issue of cognitive skill development. What traditional responses are able to do, however, is to cause stress and, eventually, crisis.
And, sadly, we come to the point of this article: it’s not just parents and caregivers of people with FASDs who are unequipped on what works with FASDs. There is no single system equipped to support the cognitive or behavioral needs of a child or adult with an FASD.
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