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Sufferers and Society Both Pay a Price for Affliction
Jan 18, 1997
San Diego Union Tribune
By Carey Quan Gelernter, SEATTLE TIMES

The classic story of the fetal-alcohol syndrome child:

You tell the child, "Peter, don't run in the street, you'll be hit by a car." You ask him to repeat it; he does.

"Do you understand?" you ask him. "Yes," he says.

You open the door. He runs into the street.

"Why did you run in the street?" you ask.

"I didn't run in the street," he says. "I was going to Georgia's house."

They may repeat words accurately, but it doesn't mean they understand.

People with fetal-alcohol syndrome (FAS) or the related fetal-alcohol effect (FAE) are not all retarded. In fact, many have near-normal or even normal intelligence, especially those with FAE. But their brains have been permanently damaged. It's hard for them to focus, or to understand the consequences of their behavior. They don't get cause and effect. They have bad judgment.

As they grow up, they don't get better.

The distinctly featured FAS children begin to look more normal. But they don't think more normally. In fact, because of widespread misunderstanding of FAE and FAS, their behavior often grows worse.

"If they are punished for behavior they can't control, it's like whipping a child for being blind and not reading the blackboard," says Dr. Sterling Clarren, University of Washington professor of pediatrics and director of a new Washington statewide network of FAS clinics.

"What happens is by their teens, they are angry, depressed, isolated and they act out." And it becomes more than an individual or family problem; society pays a price, too.

Meaning, everything from clogged special-education classes to clogged jails -- with neither teachers nor the criminal-justice system necessarily knowing how best to cope.

Despite how much has been learned in the more than two decades since a French researcher and a University of Washington team documented the link between alcohol and FAS, much still needs to be done.

While increasing publicity about FAS has encouraged the majority of women to curtail drinking during pregnancy, the highest-risk women have not, says psychologist Ann Streissguth, professor of psychiatry and behavioral sciences and director of the University of Washington's fetal-alcohol unit.

And societal changes, notes Clarren, have brought about a larger pool of high-risk women.

"Before World War II, young women didn't drink. They had the propensity to become alcoholics, but they didn't start drinking socially until they were older," explains Clarren. "After the war, with more equality, they began drinking as early and as much as men. They became alcoholics quite early."

During childbearing years.

More attention needed

One of the biggest disappointments to Streissguth and others of the original researchers is that doctors still are failing to diagnose most FAE and FAS children.

The growing tendency, since the '70s, for drinking women to use drugs has further confused the picture. Streissguth says medical staff have become focused on screening pregnant women for drugs, often missing the women's alcohol use -- though alcohol is by far the more dangerous substance for fetuses.

Although the mechanisms by which damage occurs aren't fully understood, there's clear evidence, says Streissguth, of the toxic effects of alcohol on the developing embryo and fetus. It kills brain cells and disrupts normal migratory patterns of brain cells as the brain is developing. It interferes with the wiring of the central nervous system.

Additionally, FAS children who aren't diagnosed are misunderstood and mishandled, and the latest research shows they are the most likely to be causing themselves, and society, serious problems.

Consider this recent story: A judge rules a 15-year-old boy with FAS should be tried for murder as an adult, in connection with the killing of a 7-year-old during a Seattle shooting spree. His defense attorney says the schools failed to diagnose his disability, the juvenile-justice system did not tailor his rehabilitation to someone with FAS. The prosecutor argues the boy's at fault for not taking the opportunities to change.

Society, in turn, is thrashing about in wildly different directions as it grapples with how to deal with both the children and the mothers.

Case in point: Last August, a Racine, Wis., woman who gave birth to a baby with FAS was charged with attempted murder. Other women have been charged with child abuse. In 1995, a San Jose judge ordered a woman with three FAS children first to jail and treatment, then to submit to monthly pregnancy tests and to enroll in a live-in drug and alcohol program should she become pregnant during the five years she is on probation.

A better way

FAS medical experts say punitive approaches to mothers are counterproductive.

And they say early diagnosis and proper treatment could help FAS children. "They don't all have the potential to act normally, but do have the potential to be reasonably happy and productive in some ways," says Clarren. "They all can lead positive lives."

That means recognizing and treating secondary disabilities from fetal alcohol syndrome and fetal alcohol effects.

The secondary disabilities are the preventable things that happen when you don't treat people with FAS or FAE correctly (while the primary disabilities of FAS -- things such as hyperactivity and memory problems -- can't be prevented).

Streissguth's team, funded by the Centers for Disease Control for four years to document what happens to people with FAS and FAE over time, built on smaller studies that showed they had far more life problems than would be expected solely on the basis of their mental retardation or delayed development.

In this study of more than 400 people with FAS and FAE, ages 3 to 51, the team looked at what factors made their subjects' lives better or worse, with an eye to how society can improve their chances.

The most widespread secondary disability, they found, was mental-health problems -- 90 percent suffered them.

Then, for those 12 and over:

Disrupted school experiences: suspended, expelled or dropped out -- 60 percent.

Trouble with the law -- 60 percent.

Confinement: Either incarcerated for a crime, or confined to inpatient treatment, for mental-health problems or alcohol-drug problems -- 50 percent.

Inappropriate sexual behaviors -- 50 percent.

Alcohol-drug problems -- 30 percent.

Of those 21 and older, 80 percent could not live alone, and another 80 percent had problems with employment. Only seven of 90 adults in this sample lived independently without employment problems.

Those with FAE had on average more problems than those with FAS. They tend to be treated worse because they aren't as identifiable as having a disability. They commonly aren't eligible for state services, including job-skills training and a case manager.

Those diagnosed with FAS before 6 years of age and who have a more stable home life do better in life. The diagnosis is important because foster and adoptive parents who don't know what they're dealing with often are not prepared to handle the children.

A previous study of a smaller sample found that by the affected children's adolescence, 69 percent of their biological mothers were known to be dead, and one-third of children with FAS were never cared for by their biological mothers.

What next?

To be sure, some progress has been made in 23 years.

Signs warning against drinking by pregnant women are posted in bars and liquors stores and on alcoholic beverages, and there's the surgeon general's warning about the dangers to the fetus posed by alcohol. A new push comes with Congress' authorization of the Centers for Disease Control to develop a strategy to reduce FAS by 90 percent by the year 2000.

Here are some of the innovations being tried or planned:

Educating doctors: Researchers are giving doctors new tools to do a better job of diagnosing FAS.

Devising a model for helping high-risk women become sober: Clarren heads a federally funded FAS clinic, which is training a network of sister clinics opening around Washington state. The aim of the clinics is to both develop medical, social and educational treatment plans for the children to prevent secondary disabilities, and to intervene with their mothers to prevent them from producing more FAS babies.

With 60 alcoholic mothers interviewed so far, as part of a study that will take another year to complete, "it's becoming clear," says Clarren, "that they don't see pregnancy and alcohol as a problem, but as a partial solution to their real problems: depression, manic-depression, psychosis. They have a high rate of sexual abuse themselves. They use alcohol in relation to men to deaden that memory. Usually they are poor because they are alcoholic, but come from every social strata. Many have a college education.

"Just offering birth control and alcoholic treatment isn't nearly enough. They need more, like mental health and social support."

Concentrating resources on these highest-risk women makes sense, Clarren says, because "women who tend to make one (FAS baby), tend to make more." If they can be targeted and further alcoholic births curbed, he adds, "You'll reduce the total rate by 20-25 percent."

"Constructive hassling": Specific strategies must be devised to help people intervene with pregnant drinkers.

In small villages, gentle, positive social pressure has proved effective: "They have reduced FAS by 400 percent in villages in northern Scandinavia and have been similarly successful in Alaska, by gently hassling high-risk women. They say, you're part of our culture, you are important, it's important for you to have a healthy baby."

That may not necessarily work in larger cities, but people can gently hassle those in their own circles.

Information: The FAS Family Resource Institute provides information, training and referrals. (206) 531-2878.