| 24 | The Invisible and Incurable: FASD |

Among disorders, Fetal Alcohol Spectrum Disorder (FASD) is one of the most misunderstood and most prevalent. As a foster parent, I’ve spent hours upon hours learning about FASD: why it happens, what it looks like, and how individuals with FASD can thrive. This FASD Awareness Day, I’m sharing the basics of what I’ve learned because the most powerful thing we can do for individuals with FASD is learn to love them well. To do that, we need to know a lot more.

So let’s start with biology. We all begin as a cell that splits and specializes, splits and specializes, over and over and over again. Our brains, organs, limbs, and every part of our physical body comes from that first cell. When a woman drinks while pregnant, alcohol enters fetal cells — whether it’s one or more — and impairs them in different ways depending on the type of cell. It can damage them, slow down their reproductive capacity, or simply kill them. What this means is that the cell’s ability to perform its job is compromised — or eradicated in the case of death — and any cell that was meant to come from that cell has the same fate.

It’s important to note that when a woman drinks alcohol it’s metabolized in her liver before it affects her. But a baby’s liver isn’t prepared to do that job, so the alcohol isn’t broken down. Moreover, the placenta is not a barrier to alcohol at all, so alcohol enters the tiny baby in the same volume as it entered the mom. Think ratios; what was a shot to mom is a pint to baby. The baby feels the full impact of all the alcohol. So the baby is changed, biologically, according to what cells were affected, when they were affected, and to what degree they were affected.

Many people think that FASD looks like something, perhaps missing or deformed body parts and a distinct facial structure. There are some facial features that can come with FASD, but only sometimes. Women must drink on 3 specific days of pregnancy for babies to have those features. Sometimes the visible presentation of FASD can be as subtle as missing finger nails, weaker skin structure, or no baby teeth. But for most babies with FASD, their disorder is invisible. Women are most likely to drink before they know they’re pregnant and most of the baby’s outer body is not developing at that time. There’s only one organ that develops all through a pregnancy and is, therefore, the most likely to be damaged by alcohol: the brain. For most people with FASD, their disorder is only in their brain. In the control centre of their body, there are gaps in connections and missing areas. Though FASD-affected brains are capable of incredible, extraordinary things, they work really differently from typical, healthy brains — in a world that is run by typical, healthy brains.

As kids with FASD age, they demonstrate dysmaturity, which means that the gap between their chronological age and their developmental age continuously widens. They become more and more different from their peers. For a few reasons, dysmaturity being one, kids don’t usually get assessed for FASD until they’re about 8. In those 8 years, a lot of what children with FASD do can be misunderstood and responded to inappropriately. This is especially the case for foster children. Over 80% of foster kids have an FASD diagnosis and there are many cases that go undiagnosed for a variety of reasons. Compare that 80% to 4% of children in the general population; it’s extremely disproportionate. Part of the reason for this is that many parents of children with FASD are impaired by FASD themselves. While FASD is not genetic, it often contributes to lifestyles that lead to another generation with FASD. Additionally, a lot of foster kids are exposed to both pre and postnatal trauma. Cortisol, the stress hormone, is very damaging to the developing brain. Alcohol and cortisol don’t cause curable brain damage. No matter how well a foster child, or any child, is nurtured and raised, that fact remains.

There are 11 primary disabilities that an individual with FASD might have. Each of these exist on a spectrum, which means that FASD can look very, very different across the board. What area of the brain was damaged — and when and to what degree — along with all the other environmental and genetic factors that make individuals individual, determines how FASD presents. Primary disabilities impact things like memory, impulse control, abstract thinking, attention, and communication. FASD impairs executive functioning, which is what we rely on for self-regulation, planning, decision-making, and life skills like hygiene and social etiquette. FASD results in difficulties with things like sensory processing, the vestibular system, physical growth, mental health, eating, sleeping, and attachment. Our brain is responsible for so many things, so the effects of brain damage can be far reaching and unpredictable.

Secondary outcomes are what happens when primary disabilities are misunderstood. They’re things like school disruption, trouble with the law, employment issues, homelessness, substance abuse, and poor self-esteem. While primary disabilities are not changeable, secondary outcomes are changeable. Individuals with FASD only land in secondary outcomes when the world responds to them like they’re bad, stupid, rebellious, inappropriate, or aggressive. What’s misperceived as willful misbehaviour is actually biologically-based inability. It’s not an issue of won’t; it’s an issue of can’t. Secondary outcomes can be changed if we want to change them. That’s up to us and our great capacity for empathy, kindness, and understanding.

In terms of mental capacity, sensory processing, and developmental age, individuals with FASD are highly comparable to those with Autism Spectrum Disorder (ASD) or Down’s Syndrome. But because of the invisibility of FASD, shame associated with the diagnosis, and misunderstanding of its symptoms, people with FASD end up in situations that would never be the case for people with ASD or Down’s Syndrome. We, as a culture, wouldn’t allow those circumstances for the vulnerable among us. We wouldn’t stand to see them in prisons, homeless shelters, and foster care en masse. It’s time we do the same for those with FASD. It’s time we do better by them, which starts with accessing information and tuning into our compassion.

FASD may not be curable, but it’s preventable. I can’t stress sufficiently that it is never, ever safe to drink in pregnancy in any amount whatsoever. That’s my first take home message. Second, individuals with FASD are incredible and have so much to share with us. They deserve a chance at a meaningful, joyful, and fulfilling life. Once FASD is the reality for someone, we, their community, determine what their outcomes will look like. Because FASD can present in so many ways, because it’s almost always invisible, and because it can be very mild and even unknown to the individual, supporting people with FASD may feel like an impossible task. But it’s not. The key to helping is kindness. We all have that to give indiscriminately.

Err on the side of kindness. Always.


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