FASD 101/Our story

adrienne_slideFASD stands for Fetal Alcohol Spectrum Disorder. In-utero exposure to alcohol is the number one preventable cause of developmental and intellectual delays in this North America. Conservatively, FASD impacts 2-5% of all births, and causes permanent, irrevocable and untreatable brain damage. For children in foster care or who are adopted from Russia or Eastern Europe, the number is at least 17%, and may be as high as 70%. A person with FASD is likely to need services and support  for his or her entire life. The lifetime cost for these services can be 2 million dollars.

My almost 12- year old son is handsome, intense, funny, strong-willed, loving, and he also has FASD.

If you met him you’d think he was darling.  Big green eyes, wavy blond hair. Nice manners – at least in public. A great fisherman. A good conversationalist – at least with adults. We love him. Clearly. But if you know anything about FASD at all, you know that because of brain damage that occurred when his birth mother consumed alcohol during her pregnancy with him, he is very, very difficult to parent. If you didn’t know him like I do, you’d think he was oppositional, defiant, manipulative, angry, and poorly behaved. You’d call him immature, a liar, and a thief. You’d think he was spoiled, lazy, and out of control.

None of that is true.

None of this is his fault, but he gets blamed. None of this is my fault, as his mother, but I get blamed. His behavior can sometimes look like the result of bad parenting. But it’s not. Far from it. He has brain damage. He is disabled. But you sure wouldn’t know by looking at him – which is more of a curse than a blessing, if you ask me. He looks “normal” so people, including me, expect that he should act “normal.” But that doesn’t happen very often. Or at least not with intense effort.

FASD is a spectrum disorder, meaning that some children are extremely impaired and in others it’s not as disabling.  On the far, most disabled end of the spectrum are people with profound intellectual disabilities and/or serious physical problems. On the less disabled end are children who look perfectly “normal,” but whose behavior and ability to function is more like someone half their age. Some children with FASD have low IQs. Some have high IQs. All are developmentally delayed and most have difficulty in adaptive behavior, which is what determines a person’s ability to be self-sufficient.

My son doesn’t have any of the serious overt physical impacts caused by FASD, except for some subtle facial features that 10% of folks with fetal alcohol exposure also share, but he has every brain-based impact of the disorder. Doctors have diagnosed him with ADHD, Sensory Processing Disorder, Oppositional Defiant Disorder, poor working memory, mood disorder, developmental delays, borderline intelligence, and slow auditory processing. Despite that list of diagnoses, the reality is that all of these behavioral labels are part of the brain damage he experienced in utero. Instead of looking at each separate diagnosis it’s far more useful to look at his brain as a whole. The brain controls behavior. His behaviors are symptoms of his physical disability.

So what does this look like?

  • His mood is unpredictable. He’s prone to tantrums and is easily frustrated. Because we didn’t understand FASD for so long and he’s experienced chronic frustration, blame and punishment for the behaviors dictated by his brain damage, he is also often on edge. He is used to being blamed and misunderstood, so he reacts accordingly.
  • He doesn’t transition well. A request to turn off the TV because dinner is ready can result in thrown objects and all kinds of drama.
  • He’s intense. When he’s loving, he wants kisses on the mouth and full body hugs. He wants to be inside other people’s spaces, something that’s even uncomfortable for me, his mama. When he feels wronged he says he’s going to kill us and ruin everything in our house.
  • He has good days and bad days. This is one of the hallmarks of FASD: some days folks who have this kind of brain damage can function well, and the very next day they may have a much more difficult time doing the things they did so easily the previous day. To an outside person it looks like they are not trying, or they’re failing on purpose to provoke. But to the person with FASD they are working just as hard on both days, but getting different results.
  • His processing speed is slow. When I ask him to do something he is likely to need a minute or two to process. This can look like he’s ignoring me. He often says “no” immediately to any request, which can look like defiance or opposition.

Dealing with FASD has required some changes in our parenting style. Here are a few:

  • His dad and I have to be a support system for him, beyond what’s typical for his chronological age. We have to respect that at 12, he’s more like 6, and we need to change our expectations for him to reflect that.
  • We need to predict what might be difficult for him and try to manage the situation ahead of time. If he has a big reaction we need to NOT react along with him. We need to acknowledge his difficulty and help him through.
  • We need to give him time to process. Use fewer words. When he says “shut up,” we need to not focus on how rude that seems, but instead understand it as a message that we’re talking too much, that his brain won’t process.
  • We need to be behavior detectives and see unwanted behaviors as a clue to poor fit, versus something we need to punish away. Consequences-based behavioral interventions rarely work for someone with an FASD. Predicting the outcomes of their behaviors is too abstract. We have to prevent problems, versus punishing them after the fact.
  • And more, and more, and more! It’s never dull around here. He keeps us on our toes!

We had to learn an entirely new way to parent our child based on what we now know about FASD. One way of describing our approach is the “neurobehavioral model,” or the “brain-based” approach. This is outlined in the work of Diane Malbin, a social worker, mother of (now adult) children with FASD, and an internationally known expert in fetal alcohol. I was lucky enough to find Diane soon after my son was diagnosed, and now I am extremely fortunate to be a trainer, certified through her training organization, FASCETS.  The organization I’ve founded, FAFASD, presents in-person trainings and webinars as part of its mission to help families impacted by fetal alcohol.

(a slightly different version of this post was originally published in 2011 on the Special-ism website. I actually didn’t know it was there until recently; when I submitted this article I was told my writing would no longer be published by them because of my focus on FASD and I assumed they wouldn’t publish it. But they did. In any case, I’m glad I found it because my understanding of FA and its impact on my son has continued to change and evolve. )

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3 thoughts on “FASD 101/Our story

  1. I have an 11 year old daughter with FASD and would love to be in contact. They sound very similar. I am a teacher and seem to do well at getting what we desire through school but she is refusing to go now. She is an only child so is extreme in wanting her own way, in conjunction with their normal desire to want control of all situations. Any insight into non-attendance of school?

    • One of the things we focus on in the training that I do is looking for “goodness of fit” and seeing behaviors as a clue that the fit is not there. Without more details I can only guess at what’s going on, but there’s a lot about the conventional classroom environment that’s extremely challenging for our kids with FA. We ended up pulling my son from school half-way through 2nd grade because he had such bad fit.

  2. Hi Adrienne,
    I finally found your site as I have seen emails from you about the FASD workshops. I attended one in N.C. and found it extremely helpful. It really opened my eyes about this disorder and gave me a sense of support. My husband and I adopted a little girl form Russia several years ago .She is now in the 2nd grade and showing many signs of alcohol damage.We have taken her to 2 major centers for evaluation of FASD but still do not have a diagnosis. Neither center used the 4-digit diagnostic scale. One went by the lip guide and her growth measurements and the other one in addition took pictures and a lot of psychological tests. Her IQ was found to be above average.The center said that was the main reason she didn’t get the diagnosis. They mentioned in her report that all her symptoms were due to abandonment . We adopted her with no mention of having FASD . Not all centers are educated on diagnosing FASD. My husband doesn’t have the same opinion on my daughter so it has been so hard. I spend my free time taking online courses on the subject and talk with others with the same struggles hoping one day my daughter will be properly diagnosed.

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