Sunday, 3 June 2018

The Importance of Words and FASD

It has been a while again between work and life but I recently had an interesting conversation dealing with the new FASD website coming out later.  We were having a discussion about the difference between disorder versus disability versus syndrome versus injury.  It was being discussed because of the different labels that have been given over the years related to FASD.
Over the years, it has been called Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Neurodevelopmental Disorder - PreNatal Alcohol Exposure ND-PAE or sometimes (PAE), Partial Fetal Alcohol Syndrome (pFAS) and Alcohol-Related Birth Disorder or Defects (ARBD)
Today, we use Fetal Alcohol Spectrum Disorder (FASD) because we recognize this term really captures the impact of this disability.  We know now this disability is a permanent, brain-based, whole-body disability that doesn't have a cure at this time.  We also know with the proper supports, it can be managed.
When you think about the term Fetal Alcohol Spectrum Disorder, each word is so key.  Fetal means it is developed during pregnancy and only pregnancy.  Alcohol means it comes from all types of alcohol and only alcohol.  Drug usage during pregnancy does not cause FASD.  It also doesn't matter whether is is beer, wine, spirits, liquor, hard lemonade or anything else.  Spectrum is huge because it means each person living with FASD is totally unique to themselves and normally refers to cognitive levels.  They may be anywhere on the intelligence or cognitive scale from gifted to developmentally disabled and can have a wide assortment of other medical conditions.  Finally, disorder.  In its purest form, it means the absence or opposite of order.  It has a universal, permanent meaning to it.  Disability is the absence or opposite of ability.  This is a smaller term.  An ability is one function or skill.  A syndrome is a large collection of temporary effects and an injury is a temporary effect on a particular part.
In the Post Traumatic Stress Disorder world, the military now uses the term Operational Stress Injury.  Stephane Grenier makes a great argument in his writings in that PTSD is not an universal unspecified lack of order which has very negative stigma in the military world.  In the military, you never want to have a lack of order and it is not an unspecified thing.  It is temporary, not permanent which is why they now use Operational Stress Injury.  It comes from a military operation, it creates stress and it is temporary and healable which is why disorder is not the right term in that situation.
Autism Spectrum Disorder went through the same thing.  It used to have intelligence levels associated with it where it would be called Asperger's Syndrome, Autism (mild, moderate, and severe type) and PDD-NOS where the NOS means Not Otherwise Specified in the DSM-V.  Autism achieved their goal of getting everyone to understand intelligence levels have nothing to do with this.
I love it when people don't know what FASD stands for because it gives me the opportunity to share with them the significance of each term.  I just had a conversation this week with a lady who thought FASD was a condition that the birth mother can develop.  Once she understood FASD is developed in the child, not the mother, she was curious as to how it will manifest itself in the child.  At the end, she was speculating about a child she knows and whether he has FASD.  This is why it is so important we are speaking as one unified voice with one unified term.  Once Autism got all their terms classified as ASD, they took a huge step forward in their advocacy.  It shouldn't matter if we have suspected FASD, at-risk for FASD, ARND, ARBD, ND-PAE, pFAS, FAS, or FASD.  We are all under the FASD umbrella and together, we can make a difference whether it is one person at a time or one country at a time.

On the subject of the importance of words, Kids Brain Health Network and Katelyn Verstraten wrote a great article on the significance of Dr. Popova's study on FASD prevalence.  Please feel free to check it out.

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