Most children and especially most adults with a fetal alcohol syndrome disorder will never be diagnosed.
“Probably 1 percent of individuals who are walking around the state of Alaska right now who have this disability, 1 percent are getting a diagnosis and the other 99 percent are not,” said Marilyn Pierce-Bulger, a nurse practitioner and member of the diagnostic team for Anchorage-based Assets Inc.
An FASD is physical brain damage that cannot be fixed. But learning the extent of the child’s disabilities can help parents and teachers prepare for challenges ahead, open doors to social services and, in some cases, even reduce prison sentences for those with fetal alcohol syndrome convicted of certain non-violent crimes.
“We have a percent of people out there who are having very difficult lives who don’t have to,” Pierce-Bulger said.
Earlier this year, Dorothy Schooler, of Anchorage, sought a diagnosis for her adopted son Daniel in an effort to better understand his behavior and advocate for his unique education needs. Schooler suspects the 11-year-old’s birth mother drank while pregnant. He had been struggling in school, she said.
“Unless you have a diagnosis in this town, you can’t get any service,” Schooler said.
Daniel, like all people who undergo a diagnosis, was assessed individually by a speech therapist, a psychologist, an occupational therapist and a nurse practitioner. A family advocate provides them guidance. Those providers then meet with one another to discuss their findings before they arrive at a diagnosis and give pointed recommendations to the family. Their findings are also informed by health records, such as prior mental health treatment for the child and what doctors know about whether the mother drank.
“This is detective work,” Pierce-Bulger said of the method, which was developed by the University of Washington and costs thousands of dollars per person.