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International FASD Awareness Day and the 40th Anniversary of FAS - September 2013
It is fitting that the first edition of “Ask the Expert” is appearing in 2013, because the year represents two milestones in the history of FASD.
First, 2013 is the 15th anniversary of what would eventually become International FASD Awareness Day, an effort started in 1999 by three parents of
individuals with FAS. This small group of activists believed there was too little knowledge of FAS, both among the general public and among health
care professionals. Using the Internet to connect with others who shared their concern, they quickly amassed 70 volunteers across eight countries
to promote the first annual FAS Awareness Day.
Eventually, the effort became known as International FASD Awareness Day, which now takes place every year on September 9. On this day, events are
held at 9:09 a.m., which is the 9th minute of the 9th hour of the 9th day of the 9th month of the year. This date and time are used to remind everyone
that FASD is completely preventable if a woman does not consume any alcohol during the nine months of pregnancy.
The 40th Anniversary of FAS
Second, this year also marks the 40th anniversary of the creation of the term Fetal Alcohol Syndrome (FAS). Although the effects of prenatal alcohol exposure
had been documented previously, it was not until 1973 that the term was coined and attention to prenatal alcohol exposure “caught on.” Dr. Jones and Dr. Streissguth
were working on these topics from the start and they recently took the time to offer their thoughts on the 40th anniversary of their seminal work.
A Conversation with Dr. Kenneth Lyons Jones
It was in 1973 that two pediatricians from the University of Washington (UW), Dr. David Smith and Dr. Kenneth Lyons Jones, were called to the King County Hospital
in Seattle to see eight children, all of whom had been born to women with chronic alcoholism.
“All of the children were sitting with their mothers in a single room in a clinic. We went from child to child, and four of them looked exactly the same,” Dr. Jones said.
In the beginning, no one believed their findings, but they had a feeling that they had discovered something very important.
“We would sit in our office at UW and every day we’d look at each other and say, ‘This can’t be real,’” he recalled. “Then we’d see another kid.”
As the two doctors began publishing their work, a majority of pediatricians began to accept the notion of FAS as a diagnosable disorder. Other doctors were not so easily convinced.
“Unfortunately it took years for some subspecialists to get on board,” Jones said. “And obviously, try as we might, educating the public took a lot longer than that.”
Dr. Jones claimed that more than the work of the research community, the event most responsible for bringing public attention to FAS was publication of Michael Dorris’s memoir
The Broken Cord, which won the National Book Critics Circle Award for General Nonfiction in 1989.
“The unfortunate thing is, through a long period of time, [researchers were] focused in terms of … documenting prevalence of the disorder, looking at the neurobehavioral effects, trying to identify the neurobehavioral phenotypes,” Dr. Jones said. He went on to note that very little has been done until recently on the development of intervention and prevention strategies to stem the sole cause of FASD—drinking during pregnancy.”
“The real bottom line, of course, is prevention,” Jones said. “And we know pretty much nothing about that at this point. We don’t even really know what causes this disorder. We know if you don’t drink [during pregnancy] you don’t have a baby with this disorder, but we don’t know what it is about alcohol and what genes are affected.”
As such, Dr. Jones said, “I still persist in feeling very strongly that the only safe approach is not drinking anything during pregnancy, and I am a loud voice as far as it’s concerned.”
When asked where he saw the field going in the next 40 years, Dr. Jones first noted how far the field has come over the last 40.
“When you live through every day of this, you think things are coming awfully slowly, but when you look back 40 years, we’ve come a long way pretty darn quickly.
The thing that we’ve really discovered is we’re talking about—certainly without any question—the most common environmental cause of birth defects and mental retardation
that there is,” Dr. Jones said.
In discussing the future of the field, Dr. Jones again spoke of the importance of prevention. He said “The major place we’ve come since the early days…is that we’re now focusing on the things
that are really important, and those are intervention and prevention.”
Dr. Jones added, “There’s a huge amount of new awareness of this disorder, which I think is really, really phenomenal.” He also noted the emergence of a national conference on preventing
and addressing FASD. He also cited the work of the American Academy of Pediatrics, which recently declared that pediatricians must think about FASD and recognize that alcohol is a common
cause of neurobehavioral effects even in children who don’t have an identifiable case of FAS.
Over the next ten years, Dr. Jones said he would like “to get people in their childbearing years to be aware of this disorder—and this might sound very hokey but—those women should
really start thinking seriously about planning for pregnancy when they hit 18 or 19 years of age. That means not drinking when [they’re] in a time [they] can get pregnant.”
“I think intervention and prevention are the major issues that we need to be dealing with, and I’m very hopeful that things will occur over the next ten years that will demonstrate
benefit as far as both are concerned,” Dr. Jones said.
“I Just Threw Myself into It” – Dr. Ann Streissguth Looks Forward and Back
Dr. Ann Streissguth’s seminal research over the course of many years has been essential in our understanding of how prenatal alcohol exposure affects individuals over time. Dr. Streissguth
collaborated with Dr. Jones in the early days of the identification of FAS, and became the principal investigator of the seminal Secondary Disabilities Study funded by the Centers for Disease
Control and Prevention and published in 1996. In addition, she co-edited and co-authored The Challenges of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities
(University of Washington Press, 1997), among many other important papers and books.
“It was amazing,” she said when asked what it was like to work on FAS in the early 1970s. “It took over my life. It was so exciting and so new and so unknown. The need for education was so huge and the lack
of knowledge among health professionals was so [pronounced] that there was just so much to be done.”
When asked about the future of the field, Dr. Streissguth stated that she had recently attended the 40th birthday party of one of the first children diagnosed with FAS, an experience that drove home the
importance of prevention and early intervention.
“To see him at 40 years old was an amazing experience,” she said. “He was happy and involved in people. He had that same outgoing attitude that he’d always had because he’d never been physically or
sexually abused. Through early detection of this disability we, as a society, have been able to protect him from the bad things that otherwise could’ve happened to him on top of his diagnosis.”
Dr. Streissguth noted that this experience illustrates the success that an individual with FAS is capable of with the proper identification and support. She emphasized that having stable support
people over the years was essential to his success. He has not been involved with the legal system, has not suffered abuse, and is a happy person.
“It was wonderful to see how far a very handicapped person with FAS could come in a protected, caring, and loving environment,” she said. “Maybe we need to be thinking more in general about that
and giving people access to information.”
As Drs. Streissguth and Jones point out, much has been accomplished in the 40 years since they began their work.
In addition to International FASD Awareness Day, the United States Congress authorized the SAMHSA FASD Center for Excellence in Section 519D of the Children’s Mental Health Act of 2000.
Congress mandated that the FASD Center facilitate the development and improvement of FASD prevention, treatment, and care systems in the U.S. and its territories by providing national
leadership and facilitating collaboration in the field.
Another recent milestone in the history of FASD occurred with the publication of the Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition, or DSM-5 (American Psychiatric Publishing, 2013).
For the first time, the DSM has cited “Neurobehavioral Disorders Associated with Prenatal Alcohol Exposure” in its Emerging Measures and Models section.
Despite these advances, it is essential to continue the important work of Dr. Smith, Dr. Jones, Dr. Streissguth, and the many other exceptional people who have moved this field forward over the
past 40 years. Even though visibility of FASD has increased, too many children continue to be born with a disorder that is 100% preventable. Over the next 40 years, we must make every effort to
prevent prenatal alcohol exposure and thus, FASD. In addition, we must develop and integrate strategies to improve outcomes for individuals with an FASD.
As Dr. Streissguth’s work clearly illustrates, FASD does not need to be a sentence of despair. With the proper recognition and support, those with an FASD and their families can thrive.
About the Expert
Mr. Dan Dubovsky has been the Center’s FASD Specialist for more than 10 years and has a wide variety of experience in the field. Over the course of his career, Mr. Dubovsky has presented
thousands of trainings on FASD and its related secondary disabilities to individuals, organizations, treatment programs, systems of care, SAMHSA grantees, communities, states, and the federal
government. He has authored and reviewed curricula on topics including Fetal Alcohol Syndrome (FAS), Child and Adolescent Development, Disturbances in Development, Child Sexual Abuse, Loss and
Grief, Psychopharmacology, Attention-Deficit/Hyperactivity Disorder, Anger Management, and Impulse Control Disorders. Mr. Dubovsky is the co-author of articles that have appeared in the Journal
of Psychiatry and the Law and the Journal of Addiction Medicine. In addition, he has made more than 200 presentations on FASD at regional, national, and international meetings.
A Note about the Word “Expert” from Dan: Even though this column is called “Ask the Expert,” I do not consider myself an expert in FASD. The term “expert” implies that I know everything
there is to know about FASD, and that is simply not the case. Knowing everything about such a complex issue would be nearly impossible for any one person. Even after specializing in FASD
for more than twenty years, I am still constantly learning new things from a variety of sources including researchers, ground-level clinicians, family members of individuals with an FASD,
and, of course, individuals who have an FASD. While I do posses a certain breath of knowledge, I do not have all of the answers.
DISCLAIMER: The views, opinions, and content of this column are those of the authors/experts and do not necessarily reflect the views, opinions, or policies of SAMHSA or HHS.