This book is being published at just the right time in the history of efforts to address Fetal Alcohol Spectrum Disorders. It is not only timely but supported by the thinking of some of the most talented scientists in the field. Many, I have had the pleasure of working with and I know well their selfless dedication to this field of work.
It was 1995 when I joined the National Institute on Alcohol Abuse and Alcoholism, National Institutes of Health, as the Associate Director for Collaborative Research. My career in government began 28 years prior with the conduct of studies on the effects of thalidomide and the potential for other prescription drugs to cause unanticipated fetal damage. Unsuspecting pregnant mothers consumed thalidomide hoping to escape the discomfort of nausea and brought to term children damaged for life. I took an immediate interest in the effects of alcohol consumption on pregnancy outcomes and child development. Once again, I thought the answer would be simple. Since no one willingly and knowingly wants to harm or in any way damage their developing child, the prevention of Fetal Alcohol Syndrome (FAS) had to be a straight forward task. Simply make it known and the incidence and prevalence would be reduced; the problem eliminated. The state of the research on the cause and consequences of prenatal exposure to alcohol was clear. Case studies and population studies confirmed the findings of Jones and Smith that prenatal alcohol exposure can cause a pattern of deficits that are permanent. Many research questions remained unanswered because of the low prevalence of affected children in the United States of the same age, in the same general location, and with their birth families. A major problem at the time was in the fact that only those children with the documented distinctive facial features of FAS were being counted. With the face as the only recognized biomarker for the disorder, it was puzzling to be shown a child with normal appearance and told that he or she was affected by FAS.
The breakthrough occurred in 1997, when Dr. Denis Viljoen, a pediatrician, alerted the Institute to the high prevalence of affected children in the wine growing areas of South Africa. A site visit by research scientists from many disciplines was organized by me and Dr. Kenneth Warren, currently Acting Director of the Institute, and led by Dr. TK Li, then a distinguished Professor at Indiana University and subsequently Director of the Institute until his retirement in 2008. The resulting research and studies advanced the state of knowledge and understanding of the disorder and pointed to the need for further collaborations with the governments and research scientists in other countries. And so it went and has continued until now. Many countries have joined in the research, recognized that the problem exists in their populations, and taken steps toward prevention. There now is documentation of prenatal alcohol effects in different populations with the realization that there is truly a spectrum of effects. The most devastating is not the facial features, but the behavioral patterns and cognitive deficits that are problematic and costly for families and governments.
What is now accepted widely as Fetal Alcohol Spectrum Disorders (FASD) can be prevented. Just stop drinking during pregnancy. I have travelled to many countries and seen many pamphlets, displays and tee shirts that were developed as a prevention effort. The winner in my opinion was in South Africa. The tee shirt read, "Mommy please don't hurt my brain". It had a picture of a pregnant woman drinking alcohol with an x through the alcohol- straight forward and clearly stated. Did it work? We have yet to determine but for those who do not read pamphlets and books, it is worth a try.
I cannot overlook the contributions of the agencies that joined with NIAAA in an Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders. Representatives from Federal agencies in the Department of Health and Human Services, the Department of Justice and the Department of Education have worked tirelessly since 1997 to address FASD within the mission of their organizations. As the former Chair for this Committee, I am grateful and I am certain that the families of affected children are encouraged by the progress that has been made under the leadership of these agencies: websites were developed, state FAS coordinators met annually, grants for interventions and prevention approaches increased, a Center for Excellence for FASD was created in one agency, interventions for affected children were tested in another, numerous effective workshops and symposia were held, and teachers and physicians and social workers were alerted. This work continues.
The realization that any significant progress in research (basic and translational), in prevention, and in intervention development for FASD requires multi-disciplinary and trans-disciplinary partnerships and collaborations nationally and internationally was a breakthrough. There are few persons on the planet who won't recall where they were on September 11, 2001when the World Trade Center in the United States was destroyed by explosives. An international group of FASD research scientists will always remember that they were meeting in Valencia, Spain to determine the feasibility of advancing the state of research on FASD through closer working relationships between basic research scientists and those that studied affected children. They identified the research questions that were plaguing each group and left with a determination that significant progress would be made from more intensive interactions. NIAAA published requests for applications that encouraged the open exchange of information, nurtured partnerships and encouraged the formation of teams of scientists representing multiple disciplines. And this continues.
I cannot paint the picture of progress and continuing efforts without a mention of the national and international non-profit organizations that stood by the scientists and government agencies that fought and educated in the arenas and settings in which they could be effective. I especially applaud the work of the National Organization on Fetal Alcohol Syndrome. This work continues.
Again, I think this book brings it all together. It is comprehensive and well informed and it is my hope that it will be used as a teaching tool as well as renewed motivation and re-dedication to make progress for affected children and their families.
Faye J. Calhoun
Retired Former Deputy Director
National Institute on Alcohol Abuse
Alcoholism, National Institutes of Health
Welcome to the first ebook on prenatal alcohol exposure and Fetal Alcohol Spectrum Disorders (FASD). When we first set out to do this E book, our intent was to compile a text that presented a past, present, and future directions perspective, but our authors had their own ideas. This book has turned out to be a look, not only at present research but, more importantly, innovations of research and clinical interventions. In addition, while the thematic basis for this ebook is the consequences of consuming alcohol during pregnancy, each chapter offers a different perspective resulting from prenatal exposures. As such, each chapter can "stand alone". This ebook provides a phenomenal opportunity in that it allows readers to "link" directly to relevant websites, and to view real time videos within the text.
Although the use of the term "FASD" was not officially accepted for general use until 2004, many clinicians in the field used it previously. Please note that many of the authors for this ebook use FASD generically for their discussions regarding any prenatal alcohol exposure, even when discussing issues prior to 2004. In addition, the term "intellectual disability" has replaced the term "mental retardation".
Our first chapter begins with an oft-times debatable topic- diagnosis. Susan Astley provides a provocative chapter on such a heated topic. Presenting the various models in use today, Dr. Astley provides the reader with the choices for diagnosing an FASD and the strengths and weaknesses of each model.
The second chapter, by Jennifer Thomas and Ed Riley, presents the fascinating and relatively new research on choline and other interventions. Drawn from basic science research, the interventions discussed seem to hold some promises for improving the effects of prenatal exposure to alcohol in the coming years.
The chapter by Natalie Novick Brown, Kieran O'Malley and Anne Streissguth addresses the challenges of diagnosing, assessing and treating psychiatric problems that are associated with prenatal alcohol exposure and co-occurring issues. Chapters 4-6 provide a life span look at the difficulties encountered by families dealing with prenatal alcohol exposure, and some of the innovative work being done for and with our families. Heather Carmichael Olson and Rachel Montaque, begin this journey with a chapter that addresses the importance of early interventions and other related issues for young children. Claire Coles, Elles Taddeo and Molly Millians discuss very interesting and innovative interventions that are assisting school aged children to reach their potential. And finally, Mary DeJoseph completes the life span approach in her discussion of the continuing needs of adolescents and adults that are exacerbated by the paucity of scientific research for, and what some of the clinicians in the field have been suggesting, are effective intervention.
Kay Kelly provides very practical approaches for navigating the sometimes difficult and confusing social and legal systems in Chapter 7.
The next chapter by Kathy Mitchell and Mary DeJoseph allows the reader to understand what it means to struggle with addiction, recovery and an FASD on a daily basis through interviews with and individual vignettes written by family members whose lives have been touched by FASD. Very little of this chapter was edited, so readers will get a firsthand account from the individuals themselves.
For the final chapter, the co-editors, Debbie Cohen and Susan Adubato present the "state of the states": descriptions of federal programs as well as initiatives that have been undertaken in four States and Puerto Rico are presented. This chapter illustrates differing ways state programs have evolved to address the need for screening for prenatal alcohol consumption, FASD assessment, diagnosis and treatment, and service system enhancement. The chapter concludes with information about the role of and need for joining forces with voluntary agencies to address FASD.
The last word for the ebook is a personal journey for one family and offers hope for families that their family member affected by prenatal exposure to alcohol can develop, mature, find love and success and be happy.
Please remember: The opinions expressed in this e book are those of the individual authors, and do not necessarily reflect the views of the editors.
All proceeds for this ebook will go to further training through NOFASNJ.
We would like to thank Cara Castiglio, who works for the Southern New Jersey Prenatal Cooperative for our cover art. We also are most appreciative to Ellen Dunn, NJ Office for the Prevention of Developmental Disabilities, for her careful review of this manuscript.
The editors also would like to thank Bentham Publishers for taking a chance on this ebook, and an extra "thank you" to Bushra Siddiqui, whose patience and direction made the journey much easier.
While we both work in the field of FASD, one of the greatest benefits for us in compiling this ebook is that our knowledge of the consequences of prenatal exposure to alcohol and the possibilities of interventions and treatment grew. It is our hope that you will benefit from this ebook in similar ways and that it stimulates your interest to continue to learn more about FASD. To this end, as this book is to be produced, one new publication has been released on basic research in FASD: [Alcohol, 2011:45(1):1-104] and two recently published are: Looking at legal and justice issues for individuals with FASD [Journal of Psychiatry & Law, 2010;38(4);Winter], and Alcohol Research and [2011,34(1);summer]. Both discuss various topics and new innovations in FASD, including new developments in imaging.
Susan A. Adubato
University of Medicine and Dentistry of
New Jersey New Jersey Medical School
Deborah E. Cohen
Office for the Prevention of Developmental Disabilities, New Jersey
List of Contributors
Susan A. Adubato
University of Medicine and Dentistry of New Jersey, New Jersey Medical School
Deborah E. Cohen
Office for the Prevention of Developmental Disabilities
Associate Director for Clinical Services, Division for Developmental and Behavioral Pediatrics
University of Medicine and Dentistry of New Jersey Medical School;
Director, New Jersey/Northeast FASD Education and Research Center; Director, Northern New Jersey FAS Diagnostic Center; Assistant Professor, Departments of Pediatrics and Psychiatry,
Susan J. Astley
Professor of Epidemiology/Pediatrics; Director, WA State FAS Diagnostic & Prevention Network
University of Washington
Retired, Former Deputy Director
National Institute on Alcohol Abuse and Alcoholism at NIH; Special Assistant to the Vice Chancellor for Graduate Education and Research, North Carolina Central University
Deborah E. Cohen
Former Director, New Jersey Office for the Prevention of Developmental Disabilities
Claire D. Coles
Director, Fetal Alcohol and Drug Exposure Clinic, Marcus Autism Center,
Children's Health Care of Atlanta,
Professor, Departments of Psychiatry and Behavioral Sciences and Pediatrics,
Emory University School of Medicine,
Natalie Novick Brown
Program Director, FASD Experts; Clinical Faculty, Department of Psychiatry and Behavioral Medicine
University of Washington,
Consultant, New Jersey/NE FASD Education and Research Center, UMDNJ-NJMS,
Project Director, FASD Legal Resource Center, Fetal Alcohol and Drug Unit, Department of Psychiatry and Behavioral Sciences
School of Medicine, University of Washington
Molly N. Millians
Special Educator Evaluator, Fetal Alcohol and Drug Exposure Clinic, Marcus Autism Center, Children's Health Care of Atlanta
Rachel A. Montague
Graduate Student, Department of Clinical Psychology
Seattle Pacific University,
Kathleen Tavenner Mitchell
Vice President, International Spokesperson, National Organization for Fetal Alcohol Syndrome
Heather Carmichael Olson
Department of Psychiatry and Behavioral Sciences
University of Washington School of Medicine,
Seattle Childrens' Hospital Child Psychiatry Outpatient Clinic,
Fetal Alcohol Syndrome Diagnostic and Prevention Network, Families Moving Forward Research Program
Kieran D. O’Malley
Child and Adolescent Psychiatrist, Lucena Clinic, Child Adolescent Mental Health Services (CAMHS)
Edward P. Riley
Director, Center for Behavioral teratology, Professor, Department of Psychology
San Diego State University
Ann P. Streissguth
Professor Emerita, Department of Psychiatry and Behavioral Sciences,
Founding Director, Fetal Alcohol & Drug Unit, University of Washington School of Medicine
FAS Research Education Specialist, Emory University School of Medicine, Department of Psychiatry and Behavioral Sciences
Jennifer D. Thomas
Professor, Department of Psychology, Center for Behavioral Teratology, San Diego State University