Something significant has happened in the 23 years since University of Washington researchers first identified fetal alcohol syndrome in a group of children with developmental disabilities born to alcoholic mothers: the children have grown up.
The largest FAS study of its kind, conducted at the UW, highlights the disturbing life path that many FAS adults follow < mental health problems, trouble with the law, difficulties in school and sexual abuse. Toss in unstable living environments, little or no financial help, lack of support for families and little help from service providers and you've identified a problem extending far beyond the moment when alcohol reached a developing fetus.
The four-year study of 473 subjects with fetal alcohol syndrome and fetal alcohol effects examined the behavioral, medical and social consequences and risk factors associated with the conditions and provides recommendations for future interventions. The report is the focus of a three-day international symposium, "Overcoming and Preventing Secondary Disabilities in FAS and FAE," Wednesday through Friday, Sept. 4-6, at the University of Washington.
Among the most startling of study findings, researchers found that only seven of 90 adults in the study (those aged 21 or over) lived independently and without employment problems.
"Many people don't realize that FAS is not only a children's syndrome," said Dr. Ann Streissguth, director of the UW's Fetal Alcohol and Drug Unit. "The effects associated with FAS continue, and indeed increase as children become adults." Streissguth is one of the original team of UW researchers that first linked alcohol consumption by pregnant women to birth defects in children, identifying fetal alcohol syndrome. FAS, which is totally preventable, is now known to be the most common cause of mental retardation.
A life history of 253 subjects in the study, aged 12 to 51, indicated the prevalence of the following disabilities: - mental health problems, experienced by 90 percent; - disrupted school experience (being suspended, expelled or dropping out of school), experienced by 60 percent; - trouble with the law (having been in trouble with authorities, charged or convicted with a crime), experienced by 60 percent; - confinement (inpatient treatment for mental problems or alcohol/drug problems, having been incarcerated for a crime), experienced by approximately 50 percent; - Inappropriate sexual behavior, noted by 50 percent.
In contrast, researchers identified a list of "protective factors" that may ameliorate the occurrence of secondary disabilities. These include living in a stable and nurturing home, being diagnosed with FAS before the age of 6, and having been found eligible for services from the state Division of Developmental Disabilities.
"The secondary disabilities associated with FAS and FAE are unacceptable," Streissguth said. "They severely impair people's lives and pose an extreme cost to society."
Among the recommendations by researchers based on their findings were the development of statewide networks of local FAS/FAE diagnostic clinics, coordinated parent and citizen education centers, mandated disclosure of medical/mental health background history for children placed in foster or adoptive homes, appropriate training for parents, and a long-term residential/job training program for youth and adults with FAS.
The purpose of the study, funded by the Centers for Disease Control and Prevention, was to examine the magnitude of disabilities associated with FAS and to assess risk and protective factors that may indeed help or hurt FAS individuals during their lifetimes. Streissguth explained that identifying disabilities and risk factors associated with FAS provides clues that can help physicians, parents and community agencies lessen the detrimental effects this disability poses to children and adults with FAS, their families and society.
A copy of the executive summary and introduction of the study is available upon request. Please call Julie Rathbun at (206) 543-3620.