Fetal Alcohol Syndrome: A Guide for Families and Communitiesby Ann Streissguth, Kenneth R. Warren, Godfrey P. Oakley
Readable and easy to understand, this book conveys urgent information about medical and social issues surrounding fetal alcohol syndrome (FAS). Compassionately written by the expert psychologist who conducted some of the earliest examinations of children with FAS more than 20 years ago, this guidebook presents an overview of FAS and explains how to identify the
Readable and easy to understand, this book conveys urgent information about medical and social issues surrounding fetal alcohol syndrome (FAS). Compassionately written by the expert psychologist who conducted some of the earliest examinations of children with FAS more than 20 years ago, this guidebook presents an overview of FAS and explains how to identify the disorder, how to work with children (and adults) who have it, how to talk to parents about it, and how to prevent its occurrence through sensitive education of prospective mothers and society at large.
Photographs and case studies lend personal perspective while revealing the physical and behavioral manifestations of FAS, particularly in children. For parents, families, educators, pediatricians, psychologists, adoption workers, lawyers, judges, social workers, nurses, and child care providers, this timely work speaks to everyone, promoting understanding and awareness of the challenges faced by the children who have this entirely preventable disability.
Description: This is a concise guide to better understanding the issues surrounding recognition and management of fetal alcohol syndrome (FAS). Although targeted toward families affected by FAS, it is equally valuable reading for those who provide care in the professional setting.
Purpose: The book was written to be a "vehicle for parents and professionals to use in working together to help children with FAS/FAE." In addition, this work is a valuable reference for active investigators who have limited time or access to the large, diverse body of knowledge concerning FAS. By placing information from multiple disciplines into a single, readable source, the author has given us a work that truly enhances our appreciation of the need for and effectiveness of the transdisciplinary model.
Audience: The author's foreword indicates that her audience is "parents and professionals to use in working together." This book effectively reaches its target audience, providing current information and thought provoking insights for physicians, nurses, teachers, therapists, and advocates anyone who is actively involved in the care of persons with FAS/FAE. A coauthor on the seminal paper on FAS, the author is an internationally recognized investigator who has studied FAS for the past 25 years. Although much of her research has focussed on FAS among Native Americans, the information contained in this book is applicable to various populations.
Features: The book is visually appealing and contains a good balance between data derived from the basic and applied sciences. Each chapter begins with an anecdote concerning an experience of an individual living with the impact of FAS. These serve as the focal point around which the chapter's research and diagnostic and management issues are addressed. Each chapter is well annotated with citations that range from antiquity (e.g., the Scriptures) to the present, and even includes untranslated references, giving the interested reader a large body of information for further perusal.
Assessment: This is an excellent work. The author has compiled a concise, comprehensive treatment of FAS ranging from its history to diagnosis and management. The book is empathically yet quantitatively written and exposes the reader not only to "common sense" issues surrounding FAS, but also to data that provide the basis for one's approach to care. It provides content with context. In my own work with families and other professionals involved with FAS, I found this book to be extremely useful for its breadth and depth of coverage of the topic. This book is a must for the libraries of individuals who care for persons with birth or developmental disabilities. It should be among the reference materials of physicians, social workers, educators, community advocates, and support groups. Equally important, it should find its way into the libraries of institutions that train the next generation of professionals.
"Presents a comprehensive overview of the field that is aimed at professionals, families, and communities."
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Read an Excerpt
Overview of Fetal Alcohol Syndrome
People with fetal alcohol syndrome (FAS) are born with it. FAS is a birth defect that has its primary effect on the brain. Some people with FAS are slightly affected and manifest only mildly dysfunctional behavior; others are severely affected, devastatingly disabled in their ability to cope with even simple day-to-day interactions. Each child with FAS has his or her own special needs, problems, and capabilities. FAS is a birth defect whether or not it is noticeable at birth. One does not outgrow FAS, although the manifestations may change with age. A bad environment (e.g., one in which there is abuse, neglect, or poverty) cannot cause FAS, just as a good environment (e.g., one with loving, caring parents) cannot fully undo it. A good environment and proper community supports, however, can protect the person with FAS from secondary disabilities, which can also be debilitating.
FAS is caused by prenatal alcohol exposure (see Figure 1.1) and is characterized by growth deficiency, a specific pattern of facial features, and some signs of CNS dysfunction.
PRENATAL ALCOHOL EXPOSURE CAN CAUSE A SPECTRUM OF EFFECTS
Prenatal alcohol exposure does not always result in FAS. Depending on the dose, timing, and conditions of exposure as well as on the individual characteristics of the mother and fetus, prenatal alcohol exposure can cause a range of disabling conditions. Some children are diagnosable with the full FAS; others have only partial manifestations, usually the CNS effects without the characteristic facial features or growth deficiency. Children who have only some of the characteristics of FAS (i.e., not enough for a full diagnosis) are often said to have fetal alcohol effects (FAE) or possible fetal alcohol effects (PFAE). These terms, although useful descriptively, have no specific differentiating criteria that would warrant their own diagnoses, even though these conditions can be just as debilitating as FAS. In 1996, the term alcohol-related neurodevelopmental disorder (ARND) was introduced by the Institute of Medicine (IOM, Stratton, Howe, & Battaglia). Focusing on the CNS characteristics (rather than on the growth deficiency and characteristic face), ARND is used congruently with FAE in this book. As these CNS effects can be caused by alcohol but are not unique to alcohol, the terms FAE, PFAE, and ARND are not appropriately used in the absence of a prenatal alcohol exposure history.
Research has shown that people with both FAS and those with FAE/PFAE/ARND experience many of the same kinds of problems growing up. Their families and communities also face many of the same kinds of challenges raising them. Therefore, this book frequently refers to these terms in the collective (i.e., FAS/FAE) in tacit recognition of the fact that it is the behavior problems caused by the prenatal damage from alcohol that present the primary challenge to treatment and management.
People with FAS/FAE, like everyone else, have a variety of talents and capabilities. They exhibit a wide range of intellectual levels and functional disabilities that probably reflect differing sites and degrees of prenatal brain damage due to different levels, patterns, and timing of prenatal alcohol exposure and individual differences in mothers and offspring. Despite their wide array of talents and abilities, many people with FAS exhibit some of the same general behavioral characteristics. They are usually trusting (even overly trusting), loving, and naive despite their years. They can also be grumpy, irritable, and rigid. As a result of their prenatal brain damage, they may have difficulty, especially as they mature, in evaluating a situation and using their past experiences to cope with the problems at hand. They seem to need more protection, supervision, and structure for a longer period of life than usual. Individuals with both FAS and FAE also vary widely in their ultimate outcomes and in the number of secondary disabilities that they acquire as they mature. In 1996, research from the University of Washington indicated that these secondary disabilities become more and more observable in people with FAS/FAE as they mature (Streissguth, Barr, Kogan, & Bookstein, 1996). Extremely high rates of mental illness as well as high rates of disrupted school experiences, trouble with the law, and alcohol and other drug problems are alarming. These secondary disabilities can be as debilitating as the primary disability — the brain damage — with which they were born. Many individuals with FAS/FAE need ongoing help across the life span — anything from a protective environment to a trusted friend, spouse, or advocate to help them stay grounded and focused.
Research, however, has also shown that there are risk and protective factors associated with these secondary disabilities. In other words, there are things that families and communities can do that can truly make a difference in what happens to children with FAS/FAE as they mature. But orchestrating these (i.e., mobilizing the protective factors and diminishing the risk factors) hinges on understanding the cause of the child's problems (i.e., getting a diagnosis).
PROBLEMS WITH GETTING A DIAGNOSIS
A diagnostic evaluation is the starting point for understanding, treating, and managing any medical condition. Yet, surprisingly, despite 2 decades of research and clinical observations, it remains difficult for families to find diagnosticians and clinicians specializing in FAS/FAE. An appropriate diagnosis and an understanding of that diagnosis can help families set realistic expectations, plan for some successes in their children's lives, and build a network of support and structure (see the discussion of an advocacy network in Part III). Diagnostic information about FAS not only helps people to better understand the syndrome's accompanying challenges but also facilitates appropriate treatment, intervention, and planning.
Experienced parents and teachers know that the everyday behaviors of children with FAS/FAE can be "unexpected," "perplexing," and even "unusual." Yet, because these particular behaviors have not yet been clearly linked to structural anomalies in the human brain and because they have not yet been described in the authoritative listing of mental disorders (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition [DSM-IV], American Psychiatric Association [APA], 1994), many professionals do not yet have the nomenclature to fully understand the syndrome and its implications or really "hear" what parents are saying. Although the field has grown dramatically since the mid-1980s, much confusion still exists, and there remains a gap between scientific knowledge and general clinical information. Often, parents have had to advocate for children whom they suspected had been prenatally affected by alcohol — searching out diagnosticians willing to diagnose this often unheard-of condition, searching out teachers willing to be instructed in appropriate educational methods, and searching out mental health and social services professionals willing to offer their children the extra support and understanding their condition requires.
As I was packing for an extended trip, the frantic mother of a 16-year-old boy with FAS called. She and her husband had just returned from a parent conference with Max's school psychologist. According to her report, the psychologist had indeed heard of FAS, but he thought that children with FAS simply had mental retardation. Therefore, he concluded after examining this adolescent that Max couldn't possibly have FAS because with a performance IQ well into the normal range and a verbal IQ at the lower end of normal, he clearly wasn't mentally retarded. Furthermore, the psychologist was positive that Max had only attention-deficit/hyperactivity disorder and a conduct disorder and warned his parents against putting labels such as FAS on him because they would thwart his development.
The mother begged me to give Max some test that would prove that their son had the brain damage associated with FAS, so that he could get the help and support they knew he needed. Although we did work out a plan, her quest has no easy solution. The tests have not yet been developed, and the research has not yet been done. Understanding the personal consequences of FAS/FAE on children and families and on society at large should accelerate both prevention and intervention efforts once the magnitude of the problem is recognized.
INCIDENCE OF FAS
It is important to outline what is known about prenatal alcohol exposure, which causes FAS/FAE. Alcohol is a teratogen (i.e., any agent or chemical that causes a birth defect). In fact, alcohol is the most frequently ingested teratogen in the world. Alcohol is an addictive but entirely legal drug. According to the Assistant Secretary of Health and Human Services (National Institute on Alcohol Abuse and Alcoholism [NIAAA], 1990), more than 10 million adults in the United States are addicted to alcohol. An additional 7 million abuse alcohol but are not addicted. Many of these 17 million are women in their childbearing years.
Thousands of experiments with laboratory animals have shown conclusively that alcohol can cause birth defects in almost any species, even when it is not coupled with other drug use. Among humans, prenatal alcohol exposure can and does affect children of all races and socioeconomic backgrounds. Researchers at the IOM (1996) estimate that between 0.5 and 3.0 of every 1,000 infants are born with some degree of FAS. (For additional information, see Cordero, Floyd, Martin, Davis, & Hymbaugh, 1994; Dehaene, 1995; Dehaene et al., 1991; May, Hymbaugh, Aase, & Samet, 1983; NIAAA, 1990.) If this estimate is accurate, 2,000'12,000 of the projected 4 million children born in the United States each year will have FAS.
The most accurate estimates of incidence come from a small number of studies that used expert diagnosticians. Large variations can exist from one study population to another, depending on the rate of maternal alcohol abuse and the study design. The NIAAA (1990) estimated that 1.9 in every 1,000 children are born with FAS or ARND, a rate that is nearly double the incidence of Down syndrome and almost five times that of spina bifida, two of the most commonly recognized birth defects. The NIAAA (1990) also estimated that FAE (as a clinical categorization) occurs three times more often than FAS.
On some Indian reservations, where alcohol abuse is common among women, FAS has been reported in 1 in 100 children (May et al., 1983). In one small Native American community, the incidence of FAS was 1 in 8 (Robinson, Conry, & Conry, 1987). At that frequency, FAS is a community catastrophe that threatens to wipe out any culture in just a few generations. However, FAS is not a Native American problem or a problem of poverty per se. It is an alcohol problem, and it is our problem.
Because it is caused by alcohol, FAS is completely preventable. Yet, it continues to swell the ranks of people with mental retardation. In fact, FAS is the most common known cause of mental retardation (NIAAA, 1987). In one large study conducted throughout Sweden, more cases of mental retardation resulted from alcohol-related birth defects than from all known genetic causes of mental retardation combined (Hagberg, Hagberg, Lewerth, & Lindberg, 1981).
PROBLEMS WITH STUDYING FAS POPULATIONS
Studying children affected by alcohol involves special problems. Alcohol is a legal drug, openly sold and advertised throughout the United States. Alcohol is primarily a social drug. It is used in American society to celebrate or commemorate every occasion from marriage to death. Just as the alcoholic often uses denial to ward off awareness of impending alcoholism, society seems to use denial to avoid facing the fact that alcohol can be damaging to the next generation. It is more comfortable and easier to wage a war on illegal drugs than to face the not-so-hidden dangers that alcoholic beverages pose to the fetus.
To further complicate the issue, infants and children with FAS/FAE often appear physically quite "normal," which can prevent them from obtaining the help and services they need. Unlike many birth defects, which are identified at birth and often treated surgically, FAS and FAE are usually overlooked at birth and treated later by community professionals — often unknowingly. Because damage to the brain can occur at lower doses of alcohol than those that produce gross physical anomalies or low birth weights, the brain is the organ in the body most vulnerable to the effects of prenatal alcohol. Unfortunately, we don't yet have the technology to see the brain in living people in a manner that distinguishes the subtle disruptions that shape our misperceptions and guide our maladaptive responses.
In fact, the individual features of FAS are subtle enough that many people with this birth defect pass through life undiagnosed. Certainly, most occurrences of FAS are not recorded on birth certificates, making it useless to try to obtain these data from the usual birth defects surveillance registries that were set up to measure major congenital defects (e.g., club foot, cleft lip or palate). Consider for a moment the difficulty in detecting these subtle features in a newborn in the midst of a busy urban obstetric practice, especially when there is little time to talk with mothers about their drinking. Little and colleagues (1990) have shown a 100% failure rate in detecting FAS in one of the largest maternity hospitals in the country. Unless occurrences of FAS/FAE are associated with gross physical malformations, they often remain undetected in the newborn baby.
FAS and FAE are usually "hidden" birth defects that primarily affect the brain, conditions about which neither medical science nor society has much understanding beyond the general awareness that heavy prenatal alcohol use is bad for the outcome of pregnancy. For example, the 1990 National Health Survey of more than 13,000 representative respondents found that although 89%'92% of all women knew that heavy drinking during pregnancy could increase the chances of miscarriages, mental retardation, low birth weight, and birth defects, only 29% of women of childbearing age could correctly identify FAS as a type of birth defect. Most thought it meant being born addicted to alcohol (Dufour, Williams, Campbell, & Aitken, 1994).
The effects of FAS are difficult to fathom — subtle disruptions in the proliferation and migration of the brain cells that provide the architecture for later problem solving and subtle deviations in the neurochemical balance that permits the transport of messages from one part of the brain to another. When these processes are disrupted, it is difficult to store, retrieve, and transform past experiences into knowledge in order to modify future behaviors — a source of great frustration for those with FAS and a cause of dysfunctional and maladaptive behaviors.
Dysfunctional behavior is difficult to treat effectively, even when its causes are understood. When dysfunctional behavior occurs in children with undiagnosed FAS/FAE, the cause remains unknown and the children's behavior remains an enigma. As a result, the problem behaviors of people with alcohol-related birth defects are being regularly dealt with in schools, community mental health centers, and alcohol and other drug abuse treatment programs as well as through juvenile justice and adult corrections facilities. By failing to diagnose these people as having FAS/FAE and by failing to understand that their unpredictable and often bizarre behaviors stem from the organic brain damage with which they were born, human services providers run the risk of actually causing more of the problem behaviors they are trying to ameliorate.
Much research is needed, particularly on recommended practices for treatment, education, job training, and management; policy change is also needed to reduce barriers to existing services that people with FAS/FAE need but for which they often do not qualify. Every dollar spent on education, prevention, and intervention will reap benefits in future savings. Once the problem is fully understood, effective action is possible. Already, much is known that can benefit the lives of people with FAS/FAE and their families; there is no need for families or communities to wait another minute before putting this knowledge into action. This book seeks to provide the understanding necessary for effective action.
Excerpted from chapter 1 of Fetal Alcohol Syndrome: A Guide for Families and Communities, by Ann Streissguth, Ph.D.
Copyright © 1997 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Meet the Author
Ann Streissguth, Ph.D., is a professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine. She received her master;s degree in child development from the University of California at Berkeley and her doctoral degree in clinical psychology from the University of Washington. Dr. Streissguth is a licensed clinical psychologist with a specialty in behavioral teratology. She has 25 years of experience working with individuals with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE), as well as with their families and communities. Researchers at the University of Washington Fetal Alcohol and Drug Unit, which Dr. Streissguth directs, have investigated many types of prenatal influences on later development in offspring, including alcohol, tobacco, cocaine, aspirin, and acetaminophen. Prior to her position at the Fetal Alcohol and Drug Unit, Dr. Streissguth studied the impact of poverty, preschool experience, caregiving experiences, and the rubella virus on child development. In all, she has published more than 150 scientific papers, two books, and a slide-teaching curriculum on alcohol and pregnancy. Dr. Streissguth and her colleagues have been actively involved in research on preventing FAS/FAE since these conditions were identified. In 1978, she collaborated with Dr. Ruth Little in a 3-year project (The Pregnancy and Health Program) funded by the National Institute on Alcohol Abuse and Alcoholism (NIAAA) to develop methods to intervene in female alcohol abuse during pregnancy and to prevent FAS/FAE. More recently, Dr. Streissguth and colleagues developed and evaluated the impact of a model advocacy program (Seattle Birth to 3) for helping high-risk women who are abusing alcohol and drugs during pregnancy and not receiving prenatal care. At the conclusion of the 5-year research program funded by the Center for Substance Abuse Prevention (CSAP), a local philanthropist provided funding to continue the program; then the governor of Washington State provided funds to develop a second site in another city. As of 1997, the Washington State legislature has funded the two sites for the biennium. Dr. Streissguth has been principal investigator of the Pregnancy and Health Study, a longitudinal prospective study of the relationship between early experiences and child development, funded by NIAAA since 1974. She has completed a major research project funded by the Centers for Disease Control and Prevention (CDC) on secondary disabilities in individuals with FAS/FAE and associated risk and protective factors, which culminated in an international conference in Seattle in September 1996. Since 1983, Dr. Streissguth has worked with Native American communities and the Indian Health Service to provide FAS training workshops, screening clinics, research findings, and direct consultations to Native Americans and Alaskan Natives. With her colleagues, she has also initiated a 5-year study of magnetic resonance imaging and neuropsychological functioning in people with FAS/FAE, funded by NIAAA. Along with Dr. Paul Lemoine of France, Dr. Streissguth was co-recipient of the 1985 International Jellinek Memorial Award for Advancement of the Field of Alcohol Studies. In 1987, along with Dr. Ruth Little, she received the annual award for outstanding contribution from the American Medical Society on Alcoholism and Other Drug Dependencies. In 1992, the National Council on Alcoholism and Drug Dependence presented the Silver Key Award to Dr. Streissguth on behalf of her outstanding contribution and research on FAS/FAE. In 1997, she received the Outstanding Public Service Award from the University of Washington for her efforts to help individuals with FAS/FAE and their families.
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