Fetal alcohol spectrum disorders – beyond childhood
In the pre-adoption classes that my husband and I took more than twenty years ago, the instructors emphasized that the babies being placed for adoption probably had one or more strikes against them. Among the potential disorders the infants might have had was fetal alcohol syndrome (FAS). We read the handouts about FAS, and concluded that the deficits and difficulties that come with it would’ve been a huge challenge for us.
As it turned out, both of the babies we adopted had had unfortunate prenatal circumstances, but alcohol exposure was not among them – at least, not according to the birthmothers or those who knew them. The social worker for our younger son did inform us that Alan had been born with meth in his system (and that his birthmother smoked a pack of cigarettes a day). But since Alan became an easygoing little boy who did well enough in school, we thought that he’d escaped any bad consequences of his birthmother’s habits.
Over the years I gradually forgot about fetal alcohol syndrome, to the point where I recently saw the acronym FAS and wondered what it stood for.
Since this blog attempts to cover situations that fall through the cracks, I am a little embarrassed that until now, FAS has fallen through the blog’s cracks! Let’s remedy that by looking at the behavioral and learning challenges of FAS in teens and young adults.
First of all, it seems that over the past 20 years, the terminology has been updated. Prenatal alcohol exposure leads to aberrations in brain formation that cause what are now broadly referred to as fetal alcohol spectrum disorders, or FASDs. FAS is the most severe end of the fetal alcohol spectrum. What used to be known as fetal alcohol effects (FAE) are now referred to as either alcohol-related neurodevelopmental disorder (ARND) or alcohol-related birth defects (ARBD). These are the diagnoses used when the individual has some but not all of the characteristics of FAS. If the concerns are primarily behavior- and learning-related, the diagnosis might be ARND. If the impacts are more on the physical side of things, ARBD might be the diagnosis.
For children who have an FASD, early intervention and a stable home environment are recommended to lessen the impacts. But for whatever reason, many individuals don’t receive appropriate therapy as a child, and/or their parents don’t get the appropriate educational, social, and psychological support services. The youngster’s home life may be chaotic and stressful. Without interventions, some major and persistent struggles are in store for the individual with an FASD.
According to WebMD, students with FAS have higher rates of suspensions and expulsions, difficulty getting along with others, disobedience, and truancy. Problems with controlling anger and frustration, and with understanding the motives of others, often lead to violent behavior in teens and adults, which in turn can lead to criminal charges. People with FAS are also more easily persuaded and manipulated, and therefore can become unwittingly involved in illegal activities. Even if they aren’t in trouble with the law, adults with FAS often have trouble holding a job and living independently. More than one-third have significant substance abuse problems at some point in their lives.
From what I’ve read, the struggles caused by FASD tend to be lifelong. But let’s back up a second. What are the symptoms of FAS? The characteristics may include:
Physical: abnormal facial features; small head size; below average height and body weight; problems with heart, kidney, or bones; central nervous system problems
Neurological: problems with attention, memory, learning, communication, and/or social skills
Psychological: depression, psychotic episodes, substance abuse
As you can see, FASDs can have a lot in common with ADHD, learning disabilities, and conduct or personality disorders. When a teen or young adult has a combination of those traits, prenatal exposure to alcohol (or other drugs) is possibly the underlying cause. However, clinicians frequently fail to recognize FASDs and assign other diagnoses instead.
I found an informative link, which seems to be from the FAS Community Resource Center, that indicates how FAS goes beyond merely having a collection of co-occurring individual disorders.The link provides detailed descriptions of the challenges faced by adults with FAS. It’s pretty wordy but has some great information, which I’ll attempt to summarize below. (Much of the phrasing is taken directly from the text.)
Problems with cause-and-effect relationships and impulse control – Individuals have difficulty learning from experience or grasping consequences. The ability to reflect on the outcome of actions, inaction, or impulses is faulty, works only sporadically, or is missing altogether. This makes it hard to delay gratification or work towards long-term goals.
Problems with the ability to generalize information – Individuals can’t apply what has happened before to the current situation. It’s hard to see shifting possibilities, and to apply “rules of thumb.” The first solution to a problem is usually seen as the only solution, even when it clearly doesn’t work. The person is continually surprised by adverse reaction to their repeated misbehavior.
Problems with understanding concepts and abstract thoughts – Individuals are unable – not unwilling – to conceptualize and abstract basic human interactions. The person has difficulty with time, money, numbers, and concepts like honesty, integrity, responsibility, and values. It’s hard to understand the abstractions in everyday language, such as “if”, “then”, “later”, “maybe”, “should”, “would”, “could”.
Problems with perseverative behavior – The person has a rigid way of looking at things, refusing to let go of an idea, and refusing to consider any other explanation. Trying to talk sense, rationalize, or otherwise intervene makes the situation worse.
Problems with the ability to conceptualize, internalize, and structure time – Individuals are unable to internally structure time or pay much attention to it. This leads to missed appointments and tardiness. It is difficult to track days of the week, months, seasons, and important dates. It is challenging to read an analog clock, especially if the numbers aren’t on the clock face. It is difficult to understand the subdivisions of time, such as 60 minutes in an hour, but 24 hours in a day – and each of the 12 “hour numbers” occur twice in a day! (a.m. and p.m.).
Problems with short term memory – Information may be learned, stored, and retained for a while, only to disappear without warning, and reappear just as suddenly, all with no predictable pattern. Difficulties with sequencing have serious implications for being able to “tell the truth.” An adult with FAS/E is not a “liar” in the commonly accepted sense of the word. The adult may say “untruths” when interpretation of what has been incorrectly stored to begin with runs headlong into a distorted perception of the environment and one’s relationship to it.
Problems in all areas of processing information, particularly auditory – Information input, memory, integration, and output are all impaired in adults with FAS/E. The link between input and output is defective. Despite the significant processing deficits, individuals are highly verbal, giving the impression of being more functional than they actually are.
Summary: The behaviors and functions associated with FAS/E become more obvious with increasing age as we expect people to become more self-directed, self-motivated, and self-controlled. Independent living as adults requires extensive, intensive, comprehensive, and continuing supports in place.
I’ll tell you what: learning all of this has been a huge “aha” moment for me, because since his early teens, Alan has exhibited traits falling in every one of the “problem” areas outlined above. The traits haven’t been extreme, but they have definitely been a big challenge for all of us. Alan’s behaviors and deficits in functioning have been baffling, and caused a whole lot of tension and frustration over the last several years – especially because they’ve come packaged in a highly verbal, seemingly competent guy with a lot of negative attitude. Until now, I had not seen his traits grouped together and given a name. The possibility that Alan has ARND will help me reframe my outlook on his actions and choices – and redirect my radar for things that may help him.
Remember how I said that Alan’s birthmother had used meth while pregnant? Well, in our pre-adoption classes we’d been told that although the evidence was unclear, prenatal meth exposure was believed to cause fewer problems compared to other drugs used by pregnant women. Today the evidence still isn’t clear, but I did find this article saying that meth by itself may cause more damage than alcohol does – and when meth and alcohol are both used during pregnancy, the effects are especially damaging. Hoo boy.
If you have insight into young adults grappling with an FASD, please share your story with us. If you need resources to help someone with an FASD, please check out this link from the Friendship Circle. They’ve gathered links to 17 resources and organizations related to fetal alcohol syndrome. Note that one of the books in the link, titled Fantastic Antone Grows Up, is a nonfiction book that relates specifically to teens and adults with FAS.
Finally, you might want to read this story about a few young adults in Minnesota with FAS and how they are coping. The treatment center at Westbrook farm sounds like a great program! More facilities like it are badly needed, to give teens and young adults with an FASD a better chance at navigating through life.
UPDATE: Here are some excerpts of information Val Lipow, President of the FASD Network of Southern California (see her comment below) shared with me on LinkedIn:
Everything posted to the post you shared is accurate. Exposure to other toxins may put the developing brain at risk of damage, but prenatal alcohol exposure has very specific effects to the brain and other structures of the baby in utero. Remember, alcohol is a chemical solvent, and it affects the cells in each developing prenatal system. It causes structural damage to the brain, and some of these changes interfere with the smooth transmission of neurochemical transmitters that send commands and messages in the brain and between the brain and other systems.
Children born from every ethnic group and every socioeconomic class are affected. FASD affects an estimated 1 in 100 births in North America, and the actual occurrence may be closer to 4 in 100: http://www.ncbi.nlm.nih.gov/pubmed/9451756?log$=activity. Few people are aware that FASD affects more persons than autism, Down syndrome, cerebral palsy, cystic fibrosis, spina bifida, and sudden infant death syndrome combined.
FASD affects persons across the globe, especially in North America, Europe, and Africa.
While intellectual impairment (“mental retardation”) is common among persons affected by prenatal alcohol exposure, many FASD-affected individuals have an average or above-average IQ.
Whether intellectually impaired or not, affected persons … often have coexisting mental health diagnoses, emotional and sensory dysregulation issues, and/or or learning disabilities. These issues cause the person to have cognitive and adaptive functioning abilities typically much lower than expected for their chronological age.