Everything (well almost everything) you need to know about FASD: health, statistics, stigma & more

One of the first questions I always receive after someone discovers I have fetal alcohol spectrum disorder (FASD) is, “So, what is FASD?” If you or someone you know has asked this, keep reading…

Fetal Alcohol Spectrum Disorder (FASD) is the umbrella term used to describe the range of effects that can occur when a baby is exposed to alcohol in the womb.

Ok, Let’s just stop right there. You may be thinking, “OMG! I drank before I knew! I didn’t know!” Let’s pause. You are a great parent. You want to know why I know that? You came here for answers. You are in a great location for resources. Everything will be ok.

Let’s keep going. Alcohol passes into the placenta with the baby where he or she does not have the metabolites to break down the alcohol. This alcohol then robs the baby of nutrients needed for development. This is one of the reasons why we say there is no known safe time to drink, kind to drink, or amount to drink during pregnancy.

This is one of the reasons why we say there is no known safe time to drink, kind to drink, or amount to drink during pregnancy

There are protective factors (think things like pre-natals) and risk factors (think things like extra stress), meaning each pregnancy is different. Then you add additional factors such as what time during development the baby is exposed, and there you have a spectrum. FASD looks different on everyone, but the etiology is the same–prenatal exposure to alcohol.

The Brain and Body are Both Affected

For many years, the research focused heavily on the behaviors of children with FASD, making it appear as though this is strictly a brain-based childhood diagnosis. But the fact is, we do not grow out of FASD. We become adults. Adults with executive function issues and physical concerns. This is is lifelong whole-body diagnosis.

Executive function issues refer to the “higher cognitive skills” such as concentration, judgment, memory, decision-making, impulse control, etc. So individuals with an FASD can be labeled “bad” because of impairment to the executive function center (the prefrontal cortex). These “bad behaviors” are actually quite often secondary to the brain damage. In other words, they are not choosing to forget things or fail to follow through. So, instead of saying things like, “Why don’t you just try harder?” We can implement strategies that meet the person where their need exists. We would never ask a blind person to “Just see already!”, so let’s seek to understand FASD in a similar way.

Physically, our bodies just do not operate as they should. Think of it this way: as the brain is developing in the womb, so are the organ systems. It only makes sense that alcohol would similarly affect the organ systems. Did you know that those with FASD are at an increased risk for developing chronic healthcare conditions as compared to the general population? That’s right! Myles Himmelreich, CJ Lutke, and I have been published in the Routledge Handbook of Social Work and Addicted Behaviors where we chronicle just that. After surveying over 500 adults with an FASD and an average age of 27.4, we were not surprised to discover such statistics indicated this increased risk at younger ages. There were over 200 health conditions discussed, but we’re talking about diagnosed health conditions such as heart problems, cancer, chronic ear infections, and so many others. Let it be noted that if you thought facial features were going to be discussed here (You know, those classic FAS features often cited in textbooks), that is NOT the physical condition we are concerned about. Besides, up to 90% of individuals with an FASD have NO notable facial features.

Remember, this is a spectrum. This affects everyone differently, so there is no “one-size-fits-all” (or even one-size-fits-most) treatment or intervention plan. Approaching FASD takes a unique level of understanding and compassion for which individuals such as myself are advocating.

Let’s Talk Statistics

Did you know that FASD is the leading known cause of developmental disabilities in Canada and one of the leading known causes around the world? More than that, the latest research shows that 1 in 20 people are affected with an FASD! (Read more about that here.) That’s more than Down syndrome, autism, cerebral palsy, and cystic fibrosis combined! Likely, if you are like me and have an FASD, you are encountering others with a similar story and may not even know it!

What about the criminal justice system? One of the things that we as the Internation Adult Leadership Collaborative of the FASD Changemakers like to note is that, unfortunately, the criminal justice system becomes a social safety net for so many with an FASD. According to studies, FASD is 19 – 40 times more likely to be involved in the criminal justice system. Many parents can hear this and think, “My child is more likely to make poor decisions and end up in jail!” Really what such a statistic should tell is that not enough is being done to provide early diagnosis, proper supports/accommodations, and understanding!

But what can we do for FASD?

First and foremost, apply compassion. Whether that be self-compassion or compassion for another, even compassion for life-giving mothers. We may never fully understand the circumstances surrounding someone’s pregnancy. Recently, I attended a summit where one of the presenters said the words,

“Women do not cause FASD, alcohol does.”

Those above words serve as a reminder that while education and prevention strategies are useful, as long as alcohol exists, FASD will. Instead of focusing on messaging that stigmatizes the life-giving mother (and individuals with an FASD) by implying either it’s the mother’s fault or that the individual was “preventable”, let’s shift our focus toward highlighting the unique perspectives and strengths of individuals affected by prenatal alcohol exposure can bring to the table. Let’s focus on providing support during and post-pregnancy for women in a way that embraces their journey and allows them to be honest about what they need.

Because there is no cure or one-size-fits-most treatment plan, FASD deserves a unique approach that is unique to each individual. With that said, there are some commonalities and interventions that have been found to be useful by many. Don’t I wish I could deep-dive into every strategy, but that’s a whole book friends (literally!). In fact, there are many resources available for kids and adults with an FASD. But for now, let’s just talk about a few:

Sleep tends to be a struggle for many. Think about it: if you or someone you know is having difficulties falling asleep and/or staying asleep (I wake up every 20 to 30 minutes every night) then just imagine how this can affect daily functioning. Sleep hygiene and routines can be beneficial, but first recognizing sleep as a potential issue is the first step. Perhaps you or someone you know does not realize it is not healthy or normal to only get 3 hours of sleep a night. Talk about your sleep (or lack of sleep) patterns to identify any issues you may have that can be mitigated with sleep hygiene strategies or even through the help of a medical professional.

Memory affects every area of life, and for those with an FASD, this executive function, as previously noted, is often negatively affected, resulting in a variety of everyday struggles. These are just a few strategies that have been shown to help: Instead of giving your loved one multiple steps verbally either write them down for them or have them focus on one step at a time. Utilize apps that set up reminders. The ALC is currently testing an app with the University of Rochester that is designed to help individuals with FASD manage their health. Included in the app are trackers that can be used to track daily medication as well as sections meant to help remind the user of upcoming appointments and when to refill their medication, etc. The ALC and the University of Rochester understanding that memory is a primary concern in everyday function, designed this app to provide scaffolding where needed.

A personal note: I struggle with what is called declarative memory, or the ability to recall common names of objects. Something that I have found works for me is Lion’s Mane. This mushroom passes the blood-brain barrier and stimulates nerve growth factor, and in rat studies, has been shown to improve a declarative memory known as recognition memory.

Physical and Mental Stress, in this case, is broadly referring to how the brain and body can work harder than most to function in the everyday world. Prenatal alcohol exposure can lead to hypothalamic- pituitary-adrenal (HPA) axis dysregulation and changes in glucocorticoid signaling that is associated with anxiety, depression, hyperactivity, increased stress reactivity, and diminished cognitive functioning. We can also talk about sensory issues and the countless health issues. Our bodies can tire easily and become overwhelmed with attempting to perform “normally”. Give yourself (and others) grace; grace when your body runs out of energy and needs rest and when your brain feels overwhelmed and you need to step back from an activity or situation. If only we could see just how hard our brains and bodies are working just to “keep up”, let alone perform with excellence, we would more readily offer compassion.

A fellow ALC member, Myles, put it this way: We are all running a race. Now just imagine all of us have backpacks on at the start of the race, but no one can see what is inside of these backpacks. Now picture those with FASD who have extra weights in their backpack that others don’t. We hear the words, “Go!” and we take off. We are able to keep up with the others for a while, but then we slowly begin to tire and fall behind. We cannot figure out why the others ahead of us can run their race with not as much effort as they take the lead. To the audience, we look weak, lazy even. We can feel defeated. And this can describe what it’s like to run the race of life, where few understand the “weights” that can make it more challenging to “keep up”. This analogy reminds me of a favorite passage:

“Therefore, since we also have such a large cloud of witnesses surrounding us, let us lay aside every weight and the sin that so easily ensnares us. Let us run with endurance the race that lies before us, keeping our eyes on Jesus, the source and perfecter of our faith, who for the joy that lay before Him endured a cross and despised the shame and has sat down at the right hand of God’s throne.” (Hebrews 12:1-2; HCSB).

For me, this means I have to keep my eyes fixed on the source of my strength, the very reason I can endure. A race, regardless of the amount of weight in our backpacks, takes courage. Courage to take your mark at the starting line not knowing when or if you will reach the finish line. Courage to take off when you hear the sound of the words “GO!”. Courage to press forward through the pain. Courage that perseveres through doubt, hills, and even bad weather, for me, comes from my faith, my ultimate source of endurance, and my reminder that joy comes in the morning.

We are more than our diagnosis

At the end of the day, we are people first. People with essence that goes far beyond any diagnosis we can receive. The diagnosis can be an amazing gift, but it is not who we are. The diagnosis can guide us, teaching us how to understand ourselves and navigate in a world that may not quite understand us yet. It can motivate us to speak out–in compassion (including self-compassion), love, and a deep desire to see a world where “different” is less stigmatized. It can remind us that challenges are inevitable, but no one goes through life without them. That diagnosis can even place us on a unique journey of self-discovery, but what it should NOT do is define us.

We are more than what a textbook says about FASD, what a doctor labels as FASD, and especially more than any media-driven stereotype of FASD.

Find the strengths of FASD: from a curious mind, a sense of humor, an overwhelming ability to care for others, the grit to persevere in spite of great burdens, the ability to see the world in a beautiful and unique way, to finding hope in a world that says you can’t. Personally, I don’t mind being labeled with these characteristics, and believe we should work more diligently to uncover and cultivate these qualities in those with FASD.

Each of us has been given platforms from which we can positively speak into the lives of others. Maybe that is just in our immediate family. Maybe that’s to the medical professionals or state legislatures. Maybe it’s to write a book or speak up at school. Whatever that looks like, we have been given this life on purpose and for a purpose, and let us not take for granted one of the most powerful gifts that come with this life–our voices.

Friends, this is just one blog, and while it was written by someone with both living experience and years of research, there is so much more to learn about FASD. I encourage you to continue the journey of discovery and advocacy. The community of FASD advocacy is full of people who have and are working hard to make a positive change, and we would love to have you join us.