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The invisible epidemic of Fetal Alcohol Disorder

Posted on August 27, 2018 by Sonoma Valley Sun

By Kathryn Page, Ph.D. | For The Sun

Responding to a research request for people raising their alcohol-affected grandchildren, a lovely artist (not named ‘Ann’ except for the purposes of this story) described the twisty, painful path her now-adult granddaughter (also not really ‘Abby’) has taken. As the story went on, the equally difficult path of her own daughter (ditto ‘Emma’) emerged.

Ann’s daughter Emma struggled in school. She had few friends except for the ones who were always in trouble, and she could not grasp subject matter or get herself to focus on her homework.  She had no patience for other people and was frequently irritated to the point of blowups with whatever or whoever got in her way. Emma and Ann had few peaceful moments, since Emma objected to rules, expectations, chores, family traditions—often to her own immediate detriment, but never learning from the consequences Ann imposed.

When puberty struck, it struck hard. The beautiful Emma went boy-crazy and it was mutual.  Intense romantic tangles and runaway sexuality combined with a total lack of common sense led to a crisis-filled and perilous adolescence, and ill-advised flight from home. Ann had no choice but to let Emma go.

Emma soon produced a child, from a pregnancy littered with drugs and alcohol. This child, Abby, while a sweet and pleasant girl, had great trouble in school, little common sense, tremendous distractibility, and enough difficulty reading the cues of others that she too wound up with few friends.

Leaping over the decades of much drama and great love, we arrive at the present moment.  Emma allowed Ann to raise Abby, who is doing OK with a low-level job and a good, if rough-around-the-edges, husband.

As Ann tells about her granddaughter’s difficulties, it is with full awareness of the role that prenatal exposures played. She has known for a long time that Abby is fetal alcohol-affected, and she raised her with the necessary supports and accommodations, having diligently researched the subject.

What had not occurred to Ann was that her own daughter had shown clear—flashing neon, actually—signs of the same condition. While her consumption never reached the level of problem drinking, the youthful Ann had frequently enjoyed social occasions generously laced with wine—enough to cause Fetal Alcohol Spectrum Disorders. (Significant exposure = more than 13 drinks a month, with more than 2 drinks at a time.

During that time there had been no known reason to stop drinking during pregnancy.

When I shared this observation with Ann, she was dismayed, deeply sorry, and shocked that it had never occurred to her. It came as an odd surprise to me too that the two other grandmothers I interviewed told similar tales.

Fetal Alcohol Spectrum Disorder is by far the biggest culprit in such incapacity.  Research published in this month’s Journal of the American Medical Association says that 6.7 percent of us have enough brain dysfunction from our mothers’ drinking during pregnancy to qualify for a diagnosis. Conversation with the author confirmed this startling number.

Canada recognizes FASD, as do Minnesota, Washington and Alaska. California does not, except for a couple of places in the southern end.  The symptoms lead to diagnosis of AD/HD most often, with Bipolar Disorder close behind, and way too often Autism as well. These are partially true, but do not capture the full array of impairment in reasoning, memory, self control, and judgment that cause so much trouble to the victim and everyone who cares for him or her.

Most people on the fetal alcohol spectrum look and sound completely normal. Lots of us are familiar with Fetal Alcohol Syndrome with its facial abnormalities.  It IS rare, and when doctors or teachers say “I’ve seen one or two in my career,” they are right. We won’t recognize the rest of the spectrum unless we’re looking for it, and though few professionals are trained to do so it is not that difficult—ALL medical, mental health, educational and child welfare professionals could, if they were willing, at least come to a good working hypothesis, and here’s how:  if there was significant prenatal exposure plus some combination of symptoms of AD/HD, Bipolar, learning disabilities or Autism, plus an overall and significant immaturity—and the more diagnoses a person accumulates, the more likely—absent some other explanation, it’s a safe bet that it’s actually FASD.

So what do we do then?  Given that we cannot put the missing brain cells back, we work to strengthen and support the child’s abilities.  And we plug up the holes that we can’t fix. Bringing understanding of exactly which functions are not up to snuff, we put supports in place—if memory is a big problem, we can put up visual cues and we have some patience with the need to keep repeating instructions or other information.  If sensory issues loom large, we allow the child to wear their scruffy old comfy clothes to school, or eat only soft food, or pull the hoodie over the eyes to block out light. If cause-and-effect thinking is faulty, we DO NOT EXPECT REWARDS AND PUNISHMENTS TO WORK. Yes, yelling here. These are just a few examples of an approach that works.

An enormous amount of research has been done, and interventions studied…but awareness of FASD keeps sliding off the public and professional mind. If you’ve read this whole thing you now know more than the vast majority of doctors do. If you want more information, go to www.fasdnorcal.org, or contact me at [email protected]

Kathryn Page, Ph.D. was the clinical director of the FASD Diagnostic Clinic at the Santa Clara Valley Medical Center, and has been writing, training, and consulting on the subject for around 20 years.  She is also the mom of a 37-year-old with FASD who is currently in San Quentin—and whose life, she is sure, would have been very different if she had understood FASD.

 



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