Fetal Alcohol Spectrum Disorder – The Unspoken Epidemic

Imagine a disease that affected anywhere from 2% to possibly 8% or higher of every person in New Zealand that caused them lifelong challenges.  Now imagine that this disease was 100% preventable, but for unexplained reasons the news media almost never mention it to the mostly ignorant public.  The sad thing here is, there is no need to imagine because this is the reality of Fetal Alcohol Spectrum Disorder.

Fetal Alcohol Spectrum Disorder (FASD) is not a myth, and is not a small problem. Simply put, any alcohol a woman drinks during pregnancy will pass into the placenta and subsequently through into the fetus. Alcohol is a toxin, in other words it is actually poisonous to the human body and so does damage to bodies that can not efficiently process the alcohol out of their system quickly.

FASD is an all incorporating name that covers the different levels of effects that pre-natal exposure to alcohol can cause, those being: Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorders (ARND), Static Encephalopathy Alcohol Exposed (SEAE) and Alcohol Related Birth Defects (ARBD). While some babies born with full FAS will have the characteristic physical features, which may include microcephalic head (small head, meaning smaller brain), small eye openings, small nose, smooth or lack of philtrum (line on upper lip), etc, others without the facial characteristics may still have the same brain damage and so face the same life long challenges.

There is no known safe amount of alcohol to drink while pregnant. Any amount at any stage of the pregnancy may cause irreversible brain damage to the unborn baby. Again, this is not a myth, yet the amount of ignorance and misinformation particularly in some smaller countries such as New Zealand leads people to believe that it is nothing to worry about and is just the latest ‘pc’ (politically correct) subject to push onto the public. Frighteningly there are even medical doctors who will tell pregnant women and others that it is perfectly safe to consume moderate amounts of alcohol while pregnant.

“There is no known safe amount of alcohol to drink while pregnant.”

A study by John Olney (Washington Medical School) showed that even two drinks during pregnancy may be enough to cause permanent brain damage, so the myth that “just one or two is fine” is not correct at all. (Addiction Biology 2004 Jun; 9(2):137-49).

Unfortunately the Alcohol industry is one of the most powerful industries in the World, and with their constant communication with and befriending of Politicians, are quite successful in keeping people as ignorant as possible about the realities of FASD in New Zealand and elsewhere.

Of course we can’t just focus on the fact that FASD is an epidemic, has been possibly for generations, and shows no signs of being brought under control.  What we can do is help to educate people about the challenges people affected by FASD face, and what can be done to help.

The challenges of being affected by FASD

• Difficulty connecting consequences to actions.  For example, one teenage girl with FASD (some years ago) was found to have taken a four-year old cousin swimming late one night after climbing the swimming pool security fence.  To start with they were having a good time, but soon the four-year old became tired and began crying and wanting to go back home. The older girl, with FASD, quickly discovered that if she pushed the cousin’s head under the water she didn’t cry.  This of course ended with the four-year old drowning. The older girl appeared to never understand the connection between her pushing the toddlers head under the water and her subsequent death. To her she was simply stopping the crying, so how could her cousin’s death be anything to do with her?  

• Lack of Impulse Control.  This means that often acting first and thinking latter is a common issue.  This is due to damage to a part of the brain called the Corpus Calossum, which joins the right half of the brain to the left half, allowing the two parts of the brain to communicate with each other.  The left side of the brain processes facts, rules, logic, etc while the right side processes feelings, creativity and IMPULSES. So, if there is damage to the part of the brain that links these two hemispheres, often the right side of the brain acts independent of the left side and so facts and thought about possible consequences simply does not happen.  So, act first, think later, is a reality sometimes for people with FASD.

• Very concrete thinking, struggling with abstract terms.  The same girl as in the earlier example at one stage was being supported at a residential home for girls with challenging behaviour.  However, she would regularly abscond from the house only to be picked up by the Police each time and returned. She continued the behaviour again and again, until one day someone asked her what it was about the rule she did not understand.  After all, there were signs everywhere saying “No Running Away”. The girl replied “I’m not running away though.  Each time I only walk, I don’t run.”  Keep in mind that the girl was not being sarcastic, she truly believed she wasn’t breaking any rule, as how could her ‘walking away’ break the no ‘running away’ rule?

A person affected by FASD will also face many other challenges, including memory problems, understanding the concept of time (how long to wait, how long an activity lasts, when something occurred or will occur), and often forming inappropriate relationships with others.  With all these challenges, it is no wonder that a very large percentage of people affected by FASD end up with interactions with law enforcement, and many also face mental health and addiction issues.  There are often also health conditions that are common with FASD, such as joint abnormalities, spinal problems, and others. 

What is helpful?

Patience, Tolerance and Repetition: It has been said that a child affected by FASD may need to hear the same description of how to perform a certain task up to a 1000 times before they retain the needed information. Some will cringe at this, but of course it does not mean repeating the same instruction a thousand times on the same day. But what it may mean for some children/adults affected is that just telling them two or three times about not touching the hot oven, will turn into telling them every single time the oven is on for years on end. Of course some will retain information quicker than others, so like any other disorder treat each person as an individual and adjust your instructions to the level they function at.

Avoid Slang and Euphemisms: Try to use language that is clear and free from slang. This author once worked with a young man affected by FASD and as part of a conversation I was having with him I had asked him to “Just hang on a tick” only to find him staring at me blankly and obviously confused. I quickly realised that he was trying to work out how on earth he could ‘hang’ on a ‘tick’, and why on earth would he need to?

Break Instructions into Small Steps: Too much information to process at once will result in much of it being forgotten before the FASD affected person has completed the task, meaning it is half completed or not done at all. Otherwise they may simply become very frustrated at not being able to understand what it is you are wanting them to do, and may emit behaviour that is challenging or even harmful to others. An instruction to “Put your bag away in your bedroom and get your homework out, then go sit down and make a start then I’ll bring you something to eat and drink” will be too much to take in for many people affected by FASD. Instead, the instruction “Put your bag in your bedroom now” then when that is done “Now take your homework out and take it on the table”, and continuing in these small steps will be more successful.

Lists: What has also proved helpful is to list the tasks for the day, or better still for parts of the day. For example, have a morning list: ‘Get dressed. Eat breakfast. Brush teeth. Lunch box in bag.’ Then have another list for the afternoon and evening. The person can cross off each task as they perform it to help see what task they are up to next. For some people it may be better to use visual representations on these lists, such as a picture of clothes, breakfast, lunch box, etc. The list can be kept somewhere very visible to help them remember to use it, such as on the fridge door, or on their bedroom wall.

Routines and Structure: Routine makes tasks easier to remember and easier to follow. Try and have set times for daily activities such as ‘get out of bed time’ and sleep time, dinner time, etc. Where possible, do not vary from those times, not even for special events as any variance will often mean starting from scratch again the next day to re-establish the previously set routine. Variance in routine will also often cause upsets and frustration.

Environment: The Home, school, and even the workplace need to be as low in stimuli as possible. The more pictures, colours, movement, and sounds in the environment, the more distractions to prevent or slow the person’s learning or task completion. Remember, FASD causes neurological damage and so the person affected will always struggle learning new information and keeping to task, so any distractions will simply make this even more difficult if not impossible. Remove posters, reduce noise when the person is on a specific task, and try to give them a space to work in where they are sheltered from the constant visual distractions of people moving back and forth.

FASD is a lifelong disorder, it doesn’t go away 

These recommendations need to be taken account when the person is a child, adolescent and an adult. There is hope though, in that putting in place strong and consistent support networks (such as teachers, employers, friends and family) who know the issues the person faces, and what they can do to help them, the person can make some progress and live in a way that will keep them out of the justice system, and aid them in making friends and forming appropriate relationships.