Wonderfully Made: The Story of Fetal Alcohol Spectrum Disorder

13-16 Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
—Psalm 139:13–16, The Message

Imagine yourself walking into a clothing store. The lights are dim and flickering; the racks are so close together you can barely squeeze through. The floor is sticky. The speakers set every few feet on the low ceiling are all tuned to different radio stations and blasting at high volume. The room is very warm and the air smells stale. A salesperson approaches you and, shouting to be heard, asks if he can help. How do you respond? What if you are not allowed to leave? What if you have to stay, and find a variety of clothing items in the correct color and size? How successful would you be? How would you feel by the end of the day?

This is what a school day feels like for a child with FASD. If you have been an educator for any length of time, you have taught a child affected by prenatal alcohol exposure. This is the child who appears to listen to your instructions and then wanders off to do something different. The one who hits other students for no apparent reason. The one who seems to learn something one day, but completely forgets it the next. This is the child that the other kids avoid. The child who tests your patience to the breaking point every single day.

 

FASD 101: Some Facts

Fetal Alcohol Spectrum Disorder is an umbrella term that covers a number of diagnoses: Fetal Alcohol Syndrome (FAS), Alcohol Related Neurological Defects (ARND) and pFAS (Partial FAS). Although it was previously believed that FAS was the worst of this group, and the other disorders less severe, research has proved this theory false. The differences between these diagnoses are as subtle as measurements of physical features: a diagnosis of full FAS requires certain facial features to be present, as well as a smaller-than-average build. However, very few people with FASD have these features, making FASD truly an invisible disability.

The cause of FASD is very simple: consumption of alcohol during pregnancy. Alcohol is a tetragon, a substance that causes brain damage and birth defects; it is more dangerous to a developing fetus than cigarettes, cocaine, or heroin. It is estimated that forty thousand children in the US are born with FASD every year, roughly nine of every thousand live births (Canada has similar statistics), making FASD more common than autism (http://fascenter.samhsa.gov/index.cfm). Although much research is currently underway, there are no clear answers about how much alcohol is “safe” during a pregnancy. One glass of wine a day? A few drinks on a special occasion? The short answer is that there is no proven safe amount, at any time during a pregnancy. If you are pregnant or hoping to be, don’t drink. It is just not worth the risk.

 

The Faces of FASD

Brain damage caused by in-utero alcohol exposure takes many forms. Some of them are attention disorders, learning disabilities, memory problems, poor social skills (such as the inability to interpret social cues), and difficulty understanding consequences. These are primary disabilities, and the range and severity of these issues differ between individuals. FASD is often misdiagnosed as ADHD, Autism Spectrum Disorder, Oppositional Defiance Disorder, or any number of behavioral or learning disabilities. Many children with FASD end up in foster care or adoptive homes, where they are more likely to get a correct diagnosis. Others remain with their birth families, where they may be misdiagnosed because their parents are unaware of the role that prenatal alcohol consumption may have played or because of the stigma associated with FASD. Birth families who seek out the diagnosis of FASD in order to get the best help possible for their children demonstrate tremendous courage and commitment.

As we look at how these challenges play out in the classroom there are two important things to remember.

  1. FASD is the result of physical brain damage.
  2. FASD lasts a lifetime.

With these important facts in mind, we can see disruptive acts in the classroom NOT as behaviors, but as symptoms of physical brain injury. When we address these acts, we do it in an effort to accommodate a disability, not to teach a life lesson. For example, one issue that is often cited as deeply frustrating to educators is that kids with FASD do not follow directions. The teacher says, “Children, please put your math book away and take out your science book.” Most of the kids comply, but a few don’t, even with repeated requests. Clearly this looks like willful disobedience and seems to require some sort of disciplinary action to teach the child that instructions must be followed.

When the same behavior is viewed through the new understanding of FASD, however, several things will be apparent. One is that physical brain damage often results in difficulty translating verbal directions into action. In other words, hearing instructions and acting on them are two very different things. This points to another common feature of FASD: difficulty with transition. Moving from one activity to the next can be very stressful. When these things are considered, the response is entirely different. Instead of discipline, the teacher can look for effective ways to the support the child. In this case, visual schedules, additional time for transitions, and individual reminders can make the difference between frustration and success for both the teacher and the student.

Similarly, physical aggression may be the result of confusion or overstimulation. Inability to retain information may be related to poor memory. Difficulty with appropriate interactions with other students may be caused by an inability to understand social cues. Ask yourself, “What is hard? What is the goal? What are other ways to reach this goal?” As with any child, it is important to focus on the positive. For example, children with FASD are often very creative storytellers, excellent artists, and enjoy playing with animals and younger children.

A common question that I hear from educators is, “How can I know if the child exhibiting these behaviours really has FASD if they are not diagnosed?” It is certainly true that many people who suffer the effects of FASD are either not diagnosed, or diagnosed with something else. But happily, the interventions that are effective for children with FASD are also helpful for those with other challenges, such as ADHD. My best advice is this: If what you are doing is not working, try something new.

For teachers (and parents), one of our goals is to make children more independent, more able to do things for themselves, and more responsible. Providing these kinds of supports may seem to go against these aims. We may feel that we are not teaching them the lessons they need to know to be successful in life. At this point, it is important to remember that FASD is a lifelong disorder. Just as a child with paraplegia may always need a wheelchair, and a child with poor vision may always need glasses, the child with FASD may always need external supports. Once we accept this, we are free to rejoice in the accomplishments of these remarkable children, and to support them with all the patience and love that they deserve.

 

Five Simple Ways to Make Your School FASD-Friendly

  1. Educate yourself. Ideally, find a speaker in your area to provide a workshop for the entire staff so that everyone has the same information. A wealth of resources can be found on the Internet. A particularly helpful guide is called “Strategies Not Solutions,” available at: http://www.child.alberta.ca/home/867.cfm
  2. Simplify. As with many other disorders, children with FASD are prone to overstimulation. Many classrooms, particularly in primary grades, are brightly colored, with lots of posters, books, and toys. Keep this to a minimum. Focus on things that are important, rather than decorative.
  3. Communicate. Be sure that the entire staff is aware of strategies being used. Consistency is very important! Talk to the parents. The greatest gift that you can give to them is the reassurance that you are doing everything you can to understand and support their child. When talking to the child, keep it simple, positive, and concrete.
  4. Supervise. Most kids with FASD need nearly constant supervision and direction. Work on preventing incidents, rather than responding to them. Assign someone to keep an eye on them at recess to make sure they are safe and to help them in positive interactions with their peers.
  5. Love. We believe that all of God’s children are unique and valuable. Every one of us has a role to play in nurturing these children who face the enormous challenges of FASD. Focus on the positive traits, the gifts, and the beautiful hearts of the children who have been entrusted to you.
  • Beth

    What a wonderful article. Our daughter has just been diagnosed with FASD and we are devastated by this realization. From what we have learned thus far, your article is spot on. Unfortunately, it just makes sense in this world that many of the unborn are exposed to alcohol. It’s amazing how many people know about so many other issues, such as autism, but have never even heard of FASD-even in the schools. Most children diagnosed with FASD are adopted children and will therefore affect the Christian community.
    Thank-you for your article.