Living in a scary world

Woman with FAS struggles to find a place to belong

Services available to help people damaged by alcohol

Dealing with daily life
In a study of 415 people, ages 21 and older, with FAS or FAE, these are the percentages* who required help or supervision with:
Getting dressed - 4%
Public transportation - 24%
Hygiene - 36%
Staying out of trouble - 47%
Structuring leisure time - 47%
Cooking meals - 49%
Grocery shopping - 52%
Interpersonal relationships - 56%
Getting medical care - 66%
Getting social services - 70%
Making decisions - 78%
Managing money - 82%
* Percentages are approximations
Source: Ann Streissguth, University of Washington

FAS victims may never have independent lives

Dr. Chris Cuniff diagnoses children with FAS. He is shown here during a routine exam at UMC.

They fade into the crowd, getting lost in a world that cannot understand them.
Fetal alcohol syndrome is not a problem only for children. Disabilities follow adults through life. Most cannot make it alone.
"People don't grow out of FAS," said Gail Harris, who has worked with people with prenatal alcohol damage since the 1970s.
"What are we creating in terms of who will run this democracy? Many of these people need lifelong supported living."
Research released last year by the University of Washington showed that of 415 people with FAS and FAE studied throughout the country, none of the men with FAE was able to live independently.
Only 20 percent of the men with FAS were able to live on their own.
Most women in the study also couldn't live without support.
The facial features that mark children with FAS tend to fade in adulthood, leading to expectations that are unrealistic.
Dr. Christopher Cunniff, a pediatrician and geneticist at University Medical Center, said FAS is considered a pediatric disease and is undiagnosed in many adults.
"The appearance is different in adulthood," he said. "It's not as obvious. What we need to do is study the way it looks in adults."
He said adults with FAS are expected to function, but cannot.
"A lot of these folks end up being very close to homeless," said Susan Guinn-Lahm, who helps provide services to disabled people through the Department of Economic Security's Division of Developmental Disabilities.
"I would bet a lot of people on the streets have FAS," she said. Guinn-Lahm said many adults end up alone and in trouble.
"Because of a lack of understanding of consequences, they've alienated families and don't have any support," she said. "Parents and relatives and friends tend to desert them. Their self-esteem is so low, they develop mental health issues. When self-esteem is so damaged, depression is very, very real for these people."
More than 90 percent of adults with FAS and FAE suffer mental health problems.
"The low self-esteem makes them so hungry for attention and affection," Guinn-Lahm said. "They give their money away, trying to make friends. Women tend to go with any man they see. Being a victim is better than not having any attention."
Men and women are victimized sexually, she said, and some cannot live in group homes because of promiscuity.
Women with FAS have a difficult time remembering to use birth control, and some long to have children.
"Some think a baby would be a source of affection, somebody to love," Guinn-Lahm said. "But they have not a clue how to take care of a baby."

David Harper (right), manager of La Frontera Center's Herbs Etc., waters geraniums with a disabled job trainee.

Tucson psychologist Patricia Tanner Halverson said people with FAS are more likely to produce alcohol-impaired children because of their tendency toward alcoholism. Seventy percent of women with FAE have a history of alcohol and drug problems.
"Can you imagine an FAS parent with an FAS child? How can you begin to meet this child's needs when you don't have it together?"
Tanner Halverson said many with FAS and FAE are unable to live happy, successful lives.
"They cannot take their rightful place in human society," Tanner Halverson said. "Many of them cannot take care of themselves. They cannot live independently. They will never have good judgment. It's not something they can learn."
The depression they experience is overwhelming.
"Depression comes from lots of behavioral problems, and knowing you're different, and a history of failure," said Tucson clinical neuropsychologist Kris Kaemingk, who is studying children with FAS and FAE.
The more they fail in the world, the more they are alienated by society, she said.
"Society's tolerance of a 20-year-old with the attention span of a 4-year-old is very limited," Kaemingk said. "Society is afraid of individuals bouncing off the wall."
And for most of these adults damaged by alcohol in the womb, there are few services.
The Division of Developmental Disabilities provides services to clients who either are mentally retarded or have epilepsy, cerebral palsy or autism. But many with FAS have IQs of 70 or above, which is too high for them to qualify for services.
For those who do qualify, services are not always available.
"Our vocational rehab program has 3,400 people on the waiting list," said Ron Barber, district program administrator for DDD.
"They can't even get into training and evaluation."
Even with all the services in the world, the brain damage caused by prenatal alcohol exposure is permanent.
"No matter how much training and support you give a person," said Barber, "FAS doesn't go away."