I am excited to introduce this week’s guest blogger, Aubrey from Aubrey Page FASD and the CSH Collab. Aubrey is a Fetal Alcohol Spectrum Disorder (FASD) advocate, trainer, consultant and coach for the special education community.
In 2019, my mom attended one of my trainings on Fetal Alcohol Spectrum Disorder (FASD). The presentation takes you on a journey of what you thought you understood about the brain and what is true.
While I had previously discussed my research findings with my mother, it wasn’t until she attended one of my in-person FASD trainings that her teacher spidey senses went off. It was here that she realized how FASD had impacted every single classroom that she ever taught.
The criteria she is talking about are the ten brain domains affected by prenatal alcohol exposure. We’ve been mislead as to how FASD is caused. FASD isn’t caused purely by alcoholism. We now know that even small amounts of alcohol, early in pregnancy, can cause differences (Anderson et al, 2012; May et al, 2013; Nykjaer et al, 2014; Marjonen et al, 2015; Kesmodel et al, 2019).
This isn’t a disability of children with an intellectual difference. Science has known since the 90s that the range for IQ in FASD is 20-140 (Streissguth et al, 1996). Plus we now know the inaccuracies involved in IQ testing. That one number can be the difference between a child getting support or not. These kids aren’t intentional “trouble makers”, but are actually kids whose brains are misunderstood.
If we imagine that children wake up every day hoping to do their best, then when they don’t do their best we are given the opportunity to be curious about why that is. The challenge with FASD, is that it is often the invisible culprit.
Only 10-15% of individuals have the facial features, leaving 85-90% of the population physically undetectable (Streissguth et al, 1996). There is no blood test, MRI, or genetic testing that will assess whether someone has FASD. There is only neuropsychological testing and confirmation of prenatal exposure.
In fact, a study done in 2018 confirmed what we all suspected in the FASD community. It is important to know that it is very hard to meet criteria for Fetal Alcohol Spectrum Disorder (FASD). Very few people in our population have an official diagnosis.
This study went into first grade classrooms in four different parts of the United States and assessed if the children met criteria. They didn’t go into self-contained classrooms. They didn’t only study kids with IEPs. And no, they didn’t go into the most under resourced classrooms. They assessed all of the students who they had consent for.
Their results showed that a conservative estimate of how many students met criteria for an FASD was 2-5% and a less conservative estimate was 3-10% (May et al, 2018). In the FASD community, we have settled on 5% as our prevalence. That means 1 in 20. A kid in every classroom. In this same study, only 1% of the kids who met criteria were previously diagnosed. So most of these kids are going through life as if they don’t have Fetal Alcohol Spectrum Disorder (FASD).
If a child is operating in life as if they have no disability, when, in fact, they very much do, they will be compensating in many ways. Things like social masking (performing as one’s peers in an effort to be socially acceptable) and echolalia (meaningless repetition of another’s spoken words) lead children with FASD to appear as if they are very neurotypical. It is a survival strategy that they have developed that unfortunately keeps them from accessing much needed services. Protecting themselves from feeling stupid often looks like refusal to do work or escalations over tasks.
Schools often tell exasperated parents that it is a parenting issue or a medication issue or a behavior issue. Even parents who know that FASD is part of their child’s equation often struggle to explain to teachers how FASD can impact the classroom.
What can a teacher do to serve this population? According to my mom, “You’re not going to know what it is if you’re looking at the mainstream diagnoses.” She recommends all teachers learn more specifically about the symptoms of FASD so that you can better support your students.
You must think that the hero of this story is the cure for FASD, right? No. There is no cure. The thing that will truly help these children is the adults around them better understanding their brains.
How can our perspectives shift if we realize that students are trying to start their day well? We have to recognize the difference between won’t and can’t. Would that make us more curious about what is going on in their brain? On how to create accommodations that actually work? On what it looks like to partner with their guardians to see success at home and in the classroom?
Want to know more about Fetal Alcohol Spectrum Disorder (FASD)? My mom’s experience inspired me to create the course Supporting FASD: Teacher Edition. In less than an hour, I go over the basics of FASD and some ways that teachers can support these kids. I know you don’t have much time and I know you get paid pennies, so the course is only $19. You get lifetime access because I am hoping that it is a resource that you want to go back to again and again as you realize the students that it impacts.
Want to know more about disabilities? Read this post on Dyslexia.
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