Conference Focuses On Fetal-Alcohol Syndrome, Its Problems And Solutions

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 statewide network of FAS clinics.

"What happens is by their teens, they are angry, depressed, isolated, and they act out."

Society pays the price

And it becomes more than an individual or family problem; society pays a price, too.

Next week, at a conference at the UW - where the term "fetal-alcohol syndrome" first was coined in 1973 - more than 500 participants from around the world will find out the latest on how great that price is.

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

Participants also will hear about solutions, and how Washington state plans to lead the nation in trying them.

It will be a chance to catch up on how much has been learned, in the more than two decades since a French researcher and the UW team documented the link between alcohol and FAS. And how 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 UW'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.

Meanwhile, 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.

Damage to the fetus

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, to be presented at the UW conference, shows they are the most likely to be causing themselves, and society, serious problems.

Consider just two recent familiar horror stories:

News item: A judge rules a 15-year-old boy with FAS should be tried for murder as an adult, in connection with the killing a 7-year-old during a South Seattle flophouse 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 he's at fault for not taking the opportunities to change.

News item: A 14-year-old boy with FAS is sentenced to 14 1/2 years in prison for shooting a teen-ager outside a Rainier Beach High School dance. The prosecutor argues "he has shown the ability to make his own choices."

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

In the latest sally, a Racine, Wis., woman who gave birth to a baby with FAS has been charged with attempted murder. Other women have been charged with child abuse. A San Jose judge last year 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 for endangering one of the children.

FAS medical experts say punitive approaches to mothers are counter-productive.

And they say with early diagnosis and proper treatment, the loss associated with those with FAS could be lessened. "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."

What to do?

That brings us back to next week's conference at the UW, "Overcoming and Preventing Secondary Disabilities in Fetal Alcohol Syndrome and Fetal Alcohol Effects."

Secondary disabilities means 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 was funded by the Centers for Disease Control for four years to document what happens to people with FAS and FAE over time - building on the UW's previous 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, they looked at what factors made their 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 7 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.

Early diagnoses helps

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. FAS children commonly suffer violence and sexual abuse and cycle through a long series of foster homes or adoptive placements.

A previous study of a smaller sample found that by 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.

Searching for solutions

So what about the solutions?

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.

Now 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 2,000.

Washington state is in the forefront of new solutions. 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.

Epidemiologist Susan Astley has devised a computerized screening test for "reading" faces for signs of FAS, to be published this month in the Journal of Pediatrics. In a year, Clarren says, UW researchers who are part of the FAS Diagnosis and Prevention Program will have completed a battery of diagnostic tests for doctors' use.

-- Devising a model for helping high risk women become sober: Clarren heads a federally funded FAS clinic at the UW which is training a network of sister clinics opening in Yakima, Spokane, Pullman, and Snohomish, South King, and Pierce counties. 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 college education.

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

Women need support

Meanwhile, the UW's Birth-to-Three project provides a support person to each of a small number of the highest-risk women, following them until their children are 3 years old.

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, "You'll reduce the total rate by 20-25 percent."

-- Prisons: An initial UW prison study screened hundreds of inmates and found a higher incidence of FAS among inmates than the general population, says Clarren. What's needed now is to teach prisons how to screen for FAS and to train corrections officers how to deal with it.

-- Residential: UW researchers would like to establish a national demonstration project for a residential/job training program for youth and adults. "There's not a single one in the world," says Clarren.

-- "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 for the community."

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

Additionally, Streissguth and her colleagues call for:

-- A system of parent- and citizen-education centers, and a system to train social-service providers. These would work on increasing the duration of stay in each placement of an FAS child, and providing life skills and job skills training.

-- FAS-FAE coordinators in all agencies, from criminal justice to education to health systems, who develop methods for detecting, diagnosing and serving this population.

-- Develop new tests so FAE children are eligible for state services.

-- Mandate full disclosure of medical-mental health-background history when placing children in foster or adoptive homes; provide education and training on FAS-FAE and services to families.

-- Expand alcohol-drug inpatient treatment programs for women and their children.

-- Provide advocacy and free long-term birth control options to women with FAS-FAE.

--------------------------------- Research reveals telling numbers ---------------------------------

The Numbers:

By strict definitions of fetal-alcohol syndrome - specific patterns of growth deficiencies, facial features and brain damage - there are 2 to 3 FAS babies born per 1,000 births in Washington state, says Dr. Sterling Clarren, and at least as many fetal-alcohol babies.

How much does it cost us?

A conservative estimate for FAS babies is $2.7 billion. Lifetime care for one FAS case is estimated at $1.4 million.

How fetal-alcohol syndrome was discovered

In 1968, psychologist Ann Streissguth was working in Boston on "the final, end-all study of what can happen to to a baby prenatally that can affect its neurological development." But not one question was asked about alcohol.

"There was absolutely no knowledge that alcohol could be teratogenic," that is, an agent that causes malformation of a fetus, says Streissguth today.

A few years later, Streissguth moved to the University of Washington. There, Christy Ulleland, then a pediatric resident, had become interested in babies with failure to thrive. In 1972, she noticed that many of the babies had alcoholic mothers. Going through the delivery records at Harborview Medical Center, she found more babies that fit the pattern.

Meanwhile, Dr. David Smith and his pediatric fellow, Kenneth Jones, asked to have all the children examined at one time.

"You could see the similarities, the little eyes, flat faces, small heads," recalls Streissguth.

They were hyperactive, unfocused, disorganized. "They looked like brain-damaged kids. I had worked with a lot of kids from the ghetto, and in Head Start, and I knew what impoverished kids, kids who were not stimulated, looked like; these were not kids whose moms hadn't played with them or given them the right toys. These kids were different."

As the enormity of the realization that alcohol could be such a damaging agent sunk in, Streissguth says, "I was overwhelmed with the thought - of all the women that didn't know about it."

More records searching, and the recruitment of one more child in Akron, Ohio, brought the number of children in their study to 11.

The UW team coined the term "fetal-alcohol syndrome" to describe what they'd found and published their findings in 1973 in the British medical journal Lancet.

With the Lancet article, others who'd been grappling with the same findings came forward. One was Paul Lemoine of Nantes, France, who in 1968 had published a study of children born to alcoholic mothers who had similar features and behaviors.

By 1978, in a paper authored by Smith, now deceased, and Dr. Sterling Clarren, FAS was described as "the most frequently known teratogenic cause of mental deficiency in the Western world."

------------------ Conference details ------------------

"Overcoming and Preventing Secondary Disabilities in Fetal Alcohol Syndrome and Fetal Alcohol Effects," will take place at the University of Washington Sept. 4-8; keynote speaker is Michael Dorris, author of "The Broken Cord." Registration has been filled.

The FAS Family Resource Institute provides information, training and referrals. 531-2878.