Saturday, April 23, 2011

IQ Myths in FASD, Part I

I retrospect, I can identify two powerful beliefs that kept me from connecting Hope's behaviors as a preschooler to her known exposure to alcohol in utero.

I've talked about the first one: my mis-impression that the amount of exposure reported was too small to be significant. Exposure was something that had happened to Hope in that gray fog of her past before we knew her --likely, in fact, before her birth mother even knew she existed. I was personally disconnected from it except on an intellectual level: the eight words in Hope's referral describing her mother's alcohol consumption.

Far more powerful was the belief that grew stronger every passing day: Hope was a bright little girl. She was curious and persistent in satisfying her curiosity. She loved books. She was adept at doing puzzles. Sorting by attributes like shape, color, and size came easily. She often chose creative, pretend play. She seemed socially perceptive; very early she figured out our personal hot buttons and engaged those uniquely. Daddy responded to tears; Mommy to noise; Mercy to touching; Faith to messing with possessions.

Almost everything I had read about FASD cited "cognitive impairment" as a feature of the disorder and despite having been a psychology major in college, I never considered that "cognitive impairment" could mean anything besides "lower IQ." Hope did not strike me that way at all.

My idea, wrong as it was, did not develop in a vacuum. Back in the day when the textbooks I read in college went to print,  FAS as a diagnosis was only about ten years old. Fetal Alcohol Syndrome was first identified in 1973 in children born to alcoholic mothers. The first cohort of identified children shared the now-classic facial features, along with microcephally and stunted growth. Today, we recognize that the original cohort represented the most physically affected children, who may also (although nothing is a sure thing) have more impacted IQs.

Those were the children who gave FAS a face and a name. It took time for researchers to begin looking into the phenomena of children born to mothers who drank during pregnancy and to conclude there is a range of outcomes --hence the current umbrella term Fetal Alcohol Spectrum Disorder. In 1996, in a study looking at secondary disabilities in children with an FASD diagnosis, Streissguth and her colleagues concluded:

"The sample of 473 individuals in the study included 178 with Fetal Alcohol Syndrome (FAS) and 295 with Fetal Alcohol Effects (FAE). The range of IQ of individuals with FAS was from 29 to 120, with mean IQ of 79. Range of IQ of individuals with FAE was from 42 to 142, with mean IQ of 90.  Only 16% of all the individuals with FASD in this study legally qualify as having mental retardation.  This means that 86% of the individuals with FASD have an IQ in the "normal" range." (Teresa Kellerman, 2003, here.)

Is that as startling to you as it was to me? My bright little girl with ARND is in the vast majority --in fact, she happens to fall well above the mean. And she still has an FASD.

My ignorance didn't change Hope's neurology. It just kept us in the dark.

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