The Nature of FASD
© 2003 Teresa Kellerman
“What makes Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders different from other disabilities?” Researcher Ann Streissguth asked this question of participants at the first teen/adult FASD Camp Conference in Grand Rapids, Michigan in August of 2002. No one gave the answer she was looking for. I thought of several, and some of these were verbalized by others at the conference. What makes it different in general is the nature of the disability itself.
The nature of FASD itself makes it more complex, more invisible, more difficult to recognize, diagnose, and treat, than most other disabilities.
The nature of FASD is that we are dealing primarily with permanent brain damage that is invisible to those who do not know how to recognize the symptoms.
The nature of FASD is that affected individuals function within a wide range of developmental levels – low, normal or near normal IQ, high expressive language skills, low social skills, highly knowledgeable, with inability to use information to make decisions wisely.
The nature of FASD is that most affected individuals have normal physical appearance, even in most of those with full FAS, with severe neurological impairment to the frontal lobes that leaves the person incapable of functioning safely in society without intense guidance and close supervision, that is needed even in adult years.
The nature of FASD is that the disability is shrouded in denial because of our culture’s attitude toward alcoholic beverages, alcohol as a drug.
The nature of FASD is that birth mothers are subjected to shame and judgment, due to ignorance about the plight of most birth mothers, and toward alcoholism and toward persons who suffer from alcohol addiction.
The nature of FASD is that the needs of the unborn child are not properly addressed, due to the lack of legal rights of a person before birth, due to the time the damage occurs, in prenatal development, due to our culture’s collective ignorance about and discomfort with the medical facts of early development of the unborn child as an embryo and fetus.
In addition to all of these, there is one circumstantial factor that was not mentioned at the conference. Streissguth revealed the missing element by describing what is present in the lives of babies born with other disabilibies: instant family and community support. When a baby is born with Down Syndrome or Spina Bifida or a heart defect, in most cases, the extended family gather around the new parents to offer support and encouragement, services are engaged, programs are set up, and intervention begins almost immediately. But the baby born with Fetal Alcohol Syndrome or Fetal Alcohol Effect is born into an environment that is fraught with addiction, domestic violence, abuse, neglect, poverty, and dysfunction, and later surrounded with the uncertainty and instability of kinship care by overwhelmed relatives or the chaos and confusion of the foster care system. Such is the nature of FASD.