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.
Marilyn Pierce-Bulger, a nurse practitioner working with one of Alaska’s six fetal alcohol spectrum disorder diagnostic teams, talks about why a diagnosis is vital. (Video / Marc Lester, Anchorage Daily News)
An explanation of what is going on with their brain function is crucial, the nurse practitioner said. Often, people with an FASD experience a compound effect of being isolated from society as they age.
In January, speech and language pathologist Kathie Morgan spent hours with Daniel, examining his receptive, expressive and social language abilities. Afterward, she said she noted a moderate delay in problem solving ability.
“I can see why he struggles in school with understanding the consequences of the things that he does,” Morgan said.
Where to start looking for help
If you recognize the symptoms of FASD in your family and want to know more about the disability, including how to get a diagnosis, a good place to start is by talking with your family doctor or pediatrician.
– Adults curious about a diagnosis can call the nearest assessment team. In Anchorage, that’s Assets Inc., (907) 279-6617. Find a list of other regional diagnostic teams here.
– Stone Soup Group, a statewide nonprofit that helps families caring for children with special needs, provides basic information on fetal alcohol spectrum disorders and other disabilities, and can be reached at (907) 561-3701.
– General, easy-to-understand information for families can also be found online at nofas.org.
Originally published February 26, 2014 by KYLE HOPKINS and MARC LESTER in Anchorage Daily News.