PUBLISHED: 5:25 PM on Wednesday, April 27, 2005
FASD: An invisible disability

In a well-known passage of the Bible, the apostle Paul confesses: "I do not understand what I do. For what I want to do I do not do, but what I hate I do."

Most people, regardless of faith, can relate to Paul's experience. People prenatally exposed to alcohol can probably relate more than anybody - if they have the capacity for that level of abstract thinking. Many don't. Sufferers from Fetal Alcohol Spectrum Disorder, FASD, have severe damage to, or can completely lack, parts of the brain that handle self-reflection, behavior control, and that connect the two halves of the brain - something that is necessary to weigh rules and laws against desires and impulses.

Alcohol in AK

• Fetal Alcohol Syndrome (FAS) is the leading cause of mental retardation in the country. Alaska has the highest known incidence of Fetal Alcohol Syndrome in the nation.

• Analysis of the Alaska Birth Defects Registry for the birth years 1995-1999 indicate the following: 1.5 per thousand births met the case definition for FAS, and 16.3 per thousand births were reported born affected by prenatal exposure to alcohol.

• Results of a study conducted in 1995 at an Anchorage hospital indicated that 16.2 percent of urine samples obtained from pregnant women in labor were positive for drugs or alcohol.

Source: State of Alaska FASD Training

Therefore, adults suffering the effects of prenatal alcohol exposure are more likely than other people to end up in the criminal justice system. One study, said Ric Iannolino, clinic coordinator at the Juneau FASD Diagnostic Clinic, suggested that as many as 50 percent of the people currently incarcerated in the United States suffer from alcohol-reduced brain damage incurred in utero.

Getting diagnosed with one of the 256 different specific forms of brain damage that FASD is an umbrella term for has long been a hard and expensive process. Since 2003, the Juneau FASD Diagnostic Clinic has been able to offer assessments, diagnosis, and recommendations to Southeast Alaskans with a documented alcohol exposure during their nine months in utero - as well as educate and raise awareness about this invisible yet debilitating disability.

FASD is a form of brain damage caused by exposure to alcohol during the fetal stage. Nobody can know in advance what quantities of alcohol will cause birth defects in their particular case, which is why the American Medical Association and the American Academy of Pediatrics in their recommendations say that no amount of alcohol consumption is safe for a pregnant woman.

"It can happen to anyone," said Mary [not her real name], the stepmother of a young adult born with FASD. It's not only the alcohol-addicted woman who drinks large amounts daily whose unborn child is at risk, she said: "It can happen to a professional woman going out for drinks after work before even knowing that she's pregnant."

The amount of misinformation and myths about pregnancy and alcohol consumption is disturbing to social workers working with pregnant women as well as with FASD sufferers.

"I still have [pregnant] women telling me their doctor told them to have a drink to relax," said Claire Fordyce of "Healthy Change," a department of Catholic Community Services.

"We need people to know that no amount of alcohol consumption is safe during any time of pregnancy. People think it's only at certain times - 'oh, it's only dangerous if I drink vodka in the last trimester',"

The damage to an unborn child caused by the mother's alcohol consumption is unpredictable and varies from person to person. It depends on how much alcohol the mother consumes, when in the fetal development stage the exposure happens and what parts of the brain are particularly vulnerable at that stage, but also on how a particular woman processes alcohol and breaks it down.

Even so, there is a recognizable pattern in the types of brain damage seen in people prenatally exposed to alcohol: Their brain is usually smaller, their brain structure is disorganized, and they can have literal holes in their brains. Specifically, prenatal alcohol exposure seems to impact the corpus callosum, the hippocampus, the hypothalamus, the cerebellum, the basal ganglia and the frontal lobes. (See graphic)

Behaviors associated with the brain damage typical of FASD range from inability to control impulses to inability to understand abstractions like morality, money, or time, to impaired ability to sense cold or heat. While the latter can be dangerous for a FASD sufferers physical health, the former behaviors are what makes it difficult for them to function in society, obey laws, handle money, jobs, or relationships.

While 50 percent of persons with Fetal Alcohol Syndrome (FAS) suffer from mental retardation, people with FASD usually have a normal range of IQ, from 86 to 120.

"Children with FASD are very bright in many areas," said Laura Rorem, who together with husband Larry has raised two adopted children with FASD. "I've found myself wishing they had a lower IQ, because then they would get better services - and we wouldn't be accused of being bad parents."

Being put in the category of "badly behaved" is common for children with FASD. What is perceived by a person unfamiliar with FASD as a moral shortcoming is really a physical disability. People with FASD can have problems understanding cause and effect, which can lead for example a teacher or a parent to interpret the repetition of an unwanted behavior as disobedience. In reality, the FASD sufferer might simply not be able to foresee the consequences of a behavior, or understanding that what he was criticized for in one environment is unwanted behavior in another.

And FASD is often an invisible disability. While Fetal Alcohol Syndrome comes with distinguishable physical attributes (including specific facial features), those visible attributes tend to get less pronounced as the child grows into adulthood. For most sufferers of FASD, there's nothing on the outside that says "my brain doesn't function like yours does, I'm not able to make decisions and reason abstractly the way you do."

Ric Iannolino says the greatest benefits for a person with FASD can be reaped if he or she is diagnosed before eight years of age. Early intervention is important because while the primary characteristics of a person with FASD (those differences that are a direct result and expression of their brain damage) aren't curable, a diagnosis and recommended support services can help the person avoid developing secondary characteristics - behaviors and mental illnesses that develop over time if a person with FASD does not get the necessary support. Interestingly enough, people with FAS are less likely to develop secondary problems, possibly because their disability is visible and therefore, those individuals are more likely to be diagnosed and given support services.

Some names in this article have been changed to protect the anonymity of FASD sufferers and their families.

Next Week: Parenting a person with FASD