Delinda's Gardens books and advocacy
  • Home About Delinda
  • Lies That Bind
  • M'TK Sewer Rat: End of an Empire
  • M'TK Sewer Rat: Birth of a Nation
  • Power and Circumstance
  • Something About Maudy
  • Summer Chaos
  • Janette
  • Blog
  • Fetal Alcohol Syndrome Advocacy
  • Contact Delinda
  • Enchanted Forest Florals/Calico Gardens
  • Road Trips
Fetal Alcohol Syndrome Advocacy

It is the Behavior By Delinda McCann

8/31/2015

0 Comments

 
September ninth is Fetal Alcohol Syndrome Awareness day so I will be writing a couple articles on that topic.  Fetal Alcohol Syndrome (FAS) is a specific medical diagnosis for fairly disruptive symptoms that occur when a woman has consumed alcohol while pregnant.  The facial features that are necessary to get a diagnosis form in the third week of gestation, some women may not know they are pregnant at this point.  Because the diagnosis is so dependant on the facial features that have no relationship to the overall amount of damage to the child, researchers and advocates like to talk about Fetal Alcohol Spectrum Disorder (FASD) as the more descriptive term

The amount and type of damage done when a woman drinks during pregnancy depends greatly on when she drank and how her body and the baby’s body process alcohol.  If a woman drinks while pregnant, the alcohol will disrupt whatever is happening while the alcohol is in the baby’s body.  The disruption may not be easily measurable later in life, but it will happen.  The project I worked on developed a fairly sensitive phenotype for identifying the damage. 

Remember, there is no magic that will alter the biochemistry between alcohol and the developing baby, and the damage may occur before the mother suspects that she is pregnant.  For this reason, my colleagues and I developed the slogan “Women of childbearing years who drink alcohol must be on a reliable form of birth control.” 

My project with FAS was working with the team at the Fetal Alcohol Syndrome Family Resource Institute.  Our main focus was to help connect families to the resources they needed.  When we started, nobody had any idea what resources families needed, so we set out to define what families need at each developmental stage.  Over the fourteen years we worked on this project, we interviewed roughly seven thousand families living in the US and Canada. 

Out of this project, we discovered some common behaviors among those with the disability that were present whatever the IQ and whether or not the facial features were present.  We came to recognize the behaviors very early in the project, which led to one of our funny stories.

Dr. Sterling Clarren was the primary researcher on FAS at the University of Washington.  He is quite internationally famous in the field.  For his research, he needed patients with the disability.  He had some silly notion that he wanted to be the one to diagnose his patients.  We were quite willing to let him do the official diagnosis, but when we sent someone to him, we instructed our clients on how to make up a packet of the information they would need to get a diagnosis.  Finally, Dr. Clarren caught up with us at a state function and complained that he was giving everybody we sent to him a diagnosis, and admonished us to stop screening people.  We really were not aware that we were screening people, but the incident taught us that we were seeing a set of common behaviors unique to FASD.  Eventually, Dr. Glenna Andrews, a specialist in agenesis of the corpus callosum, used our behavioral profile to develop a behavioral phenotype for FAS that accurately (.01 level) identifies FASD and separates it from other causes of agenesis of the corpus callosum.

Those of us who have lived and worked with individuals with FASD recognize the phenotype easily.  My daughter having grown up in our home with a foster sister who had FAS often babysat for other families raising kids prenatally exposed to alcohol.  As an adult, she offered to stay with a friend’s daughter while the couple celebrated their wedding anniversary.  She assumed that the reason the couple couldn’t get a sitter was that they were new in town and didn’t know anybody.  She says she quickly realized she was relating to this child as if the child had alcohol related brain damage.  This was confusing because these parents didn’t drink.  When the couple arrived home Melanie didn’t say anything about their daughter’s behavior and assured them everything was fine.  The couple expressed their relief that all had gone well and explained that their daughter was really their niece who they adopted because her mother had alcohol problems.  They ascribed her behaviors to adoption issues.  Melanie left their home thinking, “That was it.”

Recognizing the unique “don’t get it” behaviors of FASD is important because it gives us an idea of the pervasiveness of this disability.  Remember if the mother does not drink during the third week of gestation her child will not have the facial features even if she stays drunk for the rest of the pregnancy, so official numbers are low when facial features are used to count cases.  The exposed child may not have the facial features to get a FAS diagnosis, but they will certainly have the behavioral features.  Those behavioral features will be present even if mom drank socially during pregnancy. 

Ann Streisguth PhD, the mother of FAS research, demonstrated the effect of social drinking on the developing baby by identifying a characteristic pattern of reading, spelling and math scores.  With our recognition of the behavioral phenotype, we could identify which students would have the characteristic test scores, which offered us another validation that we did have a behavioral phenotype.

Now, as I try not to be involved in the tragic world of FASD, it still jumps out at me through the media. Sometimes, I see stories about someone who just doesn’t get it.  Sometimes, someone who is really successful in one area of their life attracts my attention, because despite their success, their ethics are messed up.  They don’t get it.  I still find that our phenotype allows me to identify people who will never understand the consequences of their actions, who are easily manipulated and will follow the moral path of those around them despite their professed belief in a different moral system.  Our behavioral phenotype is spot on and tells us that this disability is far more pervasive than the official numbers indicate.   I’ll cover that topic next week.

0 Comments



Leave a Reply.

    Author

    Delinda McCann is a social psychologist, author, avid organic gardener and amateur musician.

    Archives

    November 2021
    October 2021
    June 2020
    April 2020
    March 2020
    January 2020
    December 2019
    November 2019
    June 2019
    May 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    October 2012

    Categories

    All
    Fetal Alcohol Spectrum Disorders
    Gardening
    Politics
    Social Justice
    Writing

    RSS Feed

Proudly powered by Weebly