Fetal Alcohol Syndrome Definition Fetal alcohol syndrome (FAS) is a pattern of birth defects, learning, and behavioral problems

affecting individuals whose mothers consumed alcohol during pregnancy. Description FAS is the most common preventable cause of mental retardation. This condition was first recognized and reported in the medical literature in 1968 in France and in 1973 in theUnited States. Alcohol is a teratogen, the term used for any drug, chemical, maternal disease or other environmental exposure that can cause birth defects or functional impairment in a developing fetus. Some features may be present at birth including low birth weight, prematurity, and microcephaly. Characteristic facial features may be present at birth, or may become more obvious over time. Signs of brain damage include delays in development, behavioral abnormalities, and mental retardation, but affected individuals exhibit a wide range of abilities and disabilities. It has only been since 1991 that the long-term outcome of FAS has been known. Learning, behavioral, and emotional problems are common in adolescents and adults with FAS. Fetal Alcohol Effect (FAE), a term no longer favored, is sometimes used to describe individuals with some, but not all, of the features of FAS. In 1996, the Institute of Medicine suggested a five-level system to describe the birth defects, learning and behavioral difficulties in offspring of women who drank alcohol during pregnancy. This system contains criteria including confirmation of maternal alcohol exposure, characteristic facial features, growth problems, learning and behavioral problems, and birth defects known to be associated with prenatal alcohol exposure. The incidence of FAS varies among different populations studied, and ranges from approximately one in 200 to one in 2000 at birth. However, a study reported in 1997, utilizing the Institute of Medicine criteria, estimated the prevalence in Seattle, Washington from 19751981 at nearly one in 100 live births. Avoiding alcohol during pregnancy, including the earliest weeks of the pregnancy, can prevent FAS. There is no amount of alcohol use during pregnancy that has been proven to be completely safe. There is no racial or ethnic relation to FAS. Individuals from different genetic backgrounds exposed to similar amounts of alcohol during pregnancy may exhibit different signs or symptoms of FAS. Estimates state that 30-45% of women who consume six or more drinks a day throughout pregnancy will give birth to a child with FAS. The risk of FAS appears to increase as a chronic alcoholic woman progresses in her childbearing years and continues to drink. That is, a child with FAS will often be one of the last born to a chronic alcoholic woman, although older siblings may exhibit milder features of FAS. Binge drinking, defined as sporadic use of five or more standard alcoholic drinks per occasion, and "moderate" daily drinking (two to four 12 oz bottles of beer, eight to 16 ounces of wine, two to four ounces of liquor) can also result in offspring with features of FAS. Experts say a few binges early in pregnancybefore a woman may even know she is pregnantmay be enough to be dangerous, even if she stops drinking later. Causes and symptoms FAS is not a genetic or inherited disorder. It is a pattern of birth defects, learning, and behavioral problems that are the result of maternal alcohol use during the pregnancy. The alcohol freely crosses the placenta and causes damage to the developing embryo or fetus. Alcohol use by the father cannot cause FAS. If a woman who has FAS drinks alcohol during pregnancy, then she may also have a child with FAS. Not all individuals from alcohol exposed pregnancies have obvious signs or symptoms of FAS; individuals of different genetic backgrounds may be more or less susceptible to the damage that alcohol can cause. The dose of alcohol, the time during pregnancy that alcohol is used, and the pattern of alcohol use all contribute to the different signs and symptoms that are found. Classic features of FAS include short stature, low birthweight and poor weight gain, microcephaly, and a characteristic pattern of facial features. These facial features in infants and children may include small eye openings (measured from inner corner to outer corner), epicanthal folds (folds of tissue at the inner corner of the eye), small or short nose, low or flat nasal bridge, smooth or poorly developed philtrum (the

area of the upper lip above the colored part of the lip and below the nose), thin upper lip, and small chin. Some of these features are nonspecific, meaning they can occur in other conditions, or be appropriate for age, racial, or family background. Other major and minor birth defects that have been reported include cleft palate, congenital heart defects, strabismus, hearing loss, defects of the spine and joints, alteration of the hand creases, small fingernails, and toenails. Since FAS was first described in infants and children, the diagnosis is sometimes more difficult to recognize in older adolescents and adults. Short stature and microcephaly remain common features, but weight may normalize, and the individual may actually become overweight for his/her height. The chin and nose grow proportionately more than the middle part of the face and dental crowding may become a problem. The small eye openings and the appearance of the upper lip and philtrum may continue to be characteristic. Pubertal changes typically occur at the normal time. Newborns with FAS may have difficulties with feeding due to a poor suck, have irregular sleep-wake cycles, decreased or increased muscle tone, seizures or tremors. Delays in achieving developmental milestones such as rolling over, crawling, walking and talking may become apparent in infancy. Behavior and learning difficulties typical in the preschool or early school years include poor attention span, hyperactivity, poor motor skills, and slow language development. Attention deficit-hyperactivity disorder is a common associated diagnosis. Learning disabilities or mental retardation may be diagnosed during this time. Arithmetic is often the most difficult subject for a child with FAS. During middle school and high school years the behavioral difficulties and learning difficulties can be significant. Memory problems, poor judgment, difficulties with daily living skills, difficulties with abstract reasoning skills, and poor social skills are often apparent by this time. It is important to note that animal and human studies have shown that neurologic and behavioral abnormalities can be present without characteristic facial features. These individuals may not be identified as having FAS, but may fulfill criteria for alcohol-related diagnoses, as set forth by the Institute of Medicine. In 1991, Streissguth and others reported some of the first long-term follow-up studies of adolescents and adults with FAS. In the approximate 60 individuals they studied, the average IQ was 68, with 70 being the lower limit of the normal range. However, the range of IQ was quite large, as low as 20 (severely retarded) to as high as 105 (normal). The average achievement levels for reading, spelling, and arithmetic were fourth grade, third grade and second grade, respectively. The Vineland Adaptive Behavior Scale was used to measure adaptive functioning in these individuals. The composite score for this group showed functioning at the level of a seven-year-old. Daily living skills were at a level of nine years, and social skills were at the level of a six-year-old. In 1996, Streissguth and others published further data regarding the disabilities in children, adolescents and adults with FAS. Secondary disabilities, that is, those disabilities not present at birth and that might be preventable with proper diagnosis, treatment, and intervention, were described. These secondary disabilities include: mental health problems; disrupted school experiences; trouble with the law; incarceration for mental health problems, drug abuse, or a crime; inappropriate sexual behavior; alcohol and drug abuse; problems with employment; dependent living; and difficulties parenting their own children. In that study, only seven out of 90 adults were living and working independently and successfully. In addition to the studies by Streissguth, several other authors in different countries have now reported on long-term outcome of individuals diagnosed with FAS. In general, the neurologic, behavioral and emotional disorders become the most problematic for the individuals. The physical features change over time, sometimes making the correct diagnosis more difficult in older individuals, without old photographs and other historical data to review. Mental health problems including attention deficit, depression, panic attacks, psychosis and suicide threats and attempts, and overall were present in more than 90% of the individuals studied by Streissguth. A 1996 study in Germanyreported more than 70% of the adolescents they studied had persistent and severe developmental disabilities and many had psychiatric disorders, the most common of which were emotional disorders, repetitive habits,speech disorders, and hyperactivity disorders. Diagnosis

FAS is a clinical diagnosis, which means that there is no blood, x ray or psychological test that can be performed to confirm the suspected diagnosis. The diagnosis is made based on the history of maternal alcohol use, and detailed physical examination for the characteristic major and minor birth defects and characteristic facial features. It is often helpful to examine siblings and parents of an individual suspected of having FAS, either in person or by photographs, to determine whether findings on the examination might be familial, of if other siblings may also be affected. Sometimes, genetic tests are performed to rule out other conditions that may present with developmental delay or birth defects. Individuals with developmental delay, birth defects or other unusual features are often referred to a clinical geneticist, developmental pediatrician, or neurologist for evaluation and diagnosis of FAS. Psychoeducational testing to determine IQ and/or the presence of learning disabilities may also be part of the evaluation process. Treatment There is no treatment for FAS that will reverse or change the physical features or brain damage associated with maternal alcohol use during the pregnancy. Most of the birth defects associated with prenatal alcohol exposure are correctable with surgery. Children should have psychoeducational evaluation to help plan appropriate educational interventions. Common associated diagnoses such as attention deficit-hyperactivity disorder, depression, or anxiety should be recognized and treated appropriately. The disabilities that present during childhood persist into adult life. However, some of the secondary disabilities mentioned above may be avoided or lessened by early and correct diagnosis, better understanding of the life-long complications of FAS, and intervention. Streissguth has describe a model in which an individual affected by FAS has one or more advocates to help provide guidance, structure and support as the individual seeks to become independent, successful in school or employment, and develop satisfying social relationships. Prognosis The prognosis for FAS depends on the severity of birth defects and the brain damage present at birth.Miscarriage, stillbirth or death in the first few weeks of life may be outcomes in very severe cases. Major birth defects associated with FAS are usually treatable with surgery. Some of the factors that have been found to reduce the risk of secondary disabilities in FAS individuals include diagnosis before the age of six years, stable and nurturing home environments, never having experienced personal violence, and referral and eligibility for disability services. The long-term data helps in understanding the difficulties that individuals with FAS encounter throughout their lifetime and can help families, caregivers and professionals provide the care, supervision, education and treatment geared toward their special needs. Prevention of FAS is the key. Prevention efforts must include public education efforts aimed at the entire population, not just women of child bearing age, appropriate treatment for women with high-risk drinking habits, and increased recognition and knowledge about FAS by professionals, parents, and caregivers. KEY TERMS Cleft palate A congenital malformation in which there is an abnormal opening in the roof of the mouth that allows the nasal passages and the mouth to be improperly connected. Congenital Refers to a disorder that is present at birth. IQ Abbreviation for Intelligence Quotient. Compares an individual's mental age to his/her true or chronological age and multiplies that ratio by 100. Microcephaly An abnormally small head. Miscarriage Spontaneous pregnancy loss. Placenta The organ responsible for oxygen and nutrition exchange between a pregnant mother and her developing baby. Strabismus An improper muscle balance of the ocular musles resulting in crossed or divergent eyes. Teratogen Any drug, chemical, maternal disease, or exposure that can cause physical or functional defects in an exposed embryo or fetus. The effects of alcohol on the developing fetus can be devastating.

Studying the effects of alcohol has proven to be very difficult due to the many variables involved such as the age and weight of the mother, the amount of alcohol consumed and when during the pregnancy the alcohol was consumed. During the first trimester of pregnancy the face and organs of the fetus are forming. It is at this early stage of pregnancy, even before a mother may realize that she is pregnant, that the face of FAS is formed. Also at this time, birth defects can occur in organs such as the heart and kidneys. It is in the third trimester when the brain experiences tremendous growth. Alcohol exposure during this time can result in severe brain damage.

What Causes Fetal Alcohol Syndrome?

The effects of alcohol on the developing fetus can be devastating. Studying the effects of alcohol has proven to be very difficult due to the many variables involved such as the age and weight of the mother, the amount of alcohol consumed and when during the pregnancy the alcohol was consumed. During the first trimester of pregnancy the face and organs of the fetus are forming. It is at this early stage of pregnancy, even before a mother may realize that she is pregnant, that the face of FAS is formed. Also at this time, birth defects can occur in organs such as the heart and kidneys. It is in the third trimester when the brain experiences tremendous growth. Alcohol exposure during this time can result in severe brain damage. Alcohol has been shown to cause problems with the function of the placenta and can cause the umbilical veins to collapse. The result of this can be poor oxygen and poor nutrition to the developing fetus. While no one can predict the exact effects of a mothers drinking during pregnancy or the quantity of alcohol it takes to cause severe damage to the fetus, all indicators seem to point to binge drinking as having the most damaging effect. Studying the effects of alcohol consumption on a developing fetus is very difficult for many reasons. A high percentage of the expectant mothers who consume alcohol do not receive pre-natal care. They often do not admit to their alcohol consumption or may not even know the actual amount of alcohol that they have consumed. The fact that every mother and developing fetus are different makes it more complex. While doctors know the timeframe when key development in a fetus occurs, this development will still vary in every case.

When was Fetal Alcohol Syndrome first diagnosed?

In western France in 1968, a physician named Lemoine first noticed that there were similarities in the facial features and other physical and behavioral characteristics in children born to alcoholic mothers. It wasnt until 1973 that Jones and Smith came up with the term Fetal Alcohol Syndrome to give these similarities a name. It was at this point that Fetal Alcohol Syndrome started gaining the attention of doctors.

How is Fetal Alcohol Syndrome diagnosed?

According to the Fetal Alcohol Study Group of the Research Society of Alcohol there are three important categories of diagnostic criteria for Fetal Alcohol Syndrome. A child, to be diagnosed with FAS must have at least one item from group A, one from group B, and at least two items from group C to be considered to have FAS. 1. Pre-natal and post-natal growth retardation determined by looking at the weight, length or head circumference of the child. The measurements will be below the 10th percentile after taking into consideration any correction to the age due to pre-maturity. Central nervous system dysfunctions seen as neurological abnormalities, microcephaly (head circumference below the 3rd percentile), developmental delays, cognitive impairments, or behavioral issues. Facial features such as a poorly developed or absent philtrum (the ridge between the upper lip and the nose), small eye openings, thin upper lip, and a flat midface. There are many other physical symptoms that are related to FAS such as:

2. 3.

Low nasal bridge Droopy eyelids Kidney problems Joint problems Wide set eyes

Ear abnormalities Hearing impairments Short up-turned nose Genital deformities Vision impairments such as strabismus Extra folds of skin close to the nose Cleft lip, cleft lip/palate, cleft palate Frequent ear infections and/or fluid behind the ear drum Heart defects such as Ventricular Septal Defects and Atrial Septal Defects Diagnosing Fetal Alcohol Syndrome should be left to professionals because there are many other factors that can contribute to the look of a child that have nothing to do with a child having FAS. For example, children who are adopted out of environments such as orphanages where there is severe neglect and/or malnutrition may be very small and have measurements that fall below the 10th percentile. A childs heritage may cause distinct facial features such as a flat midface or small and slanted eyes. There are other syndromes that cause a child to have similar features to FAS but they are not related to FAS in any way. Children often lose their philtrim and their upper lip gets very thin when they smile. How many children do we all know that have big cheesy smiles? They may not have FAS, they may just be happy! If you are concerned that your child or potential adoptive child may have Fetal Alcohol Syndrome, you should consult with a specialist. There are many resources available to help you to locate a professional in your area. This is not a diagnosis that should be taken lightly or done in haste. This is definitely not a diagnosis that should be made by a layperson.

What is Fetal Alcohol Effect?

Fetal Alcohol Effect, or FAE usually refers to a child who has known prenatal alcohol exposure, is experiencing the problems associated with prenatal consumption of alcohol, but does not have the associated facial features of Fetal Alcohol Syndrome or FAS. People with FAE generally have many of the same symptoms and issues as people with FAS. Fetal Alcohol Effect in NOT a milder form of Fetal Alcohol Syndrome and people with FAE can actually have more symptoms than those with FAS.

How does FAS effect development?

The effects of alcohol on a childs development can be staggering. Many children with FAS have low IQs and are considered mentally retarded. No two children are affected in the same way however there are many similarities in the way these children behave. FAS does effect development. There have been many scientists who have studied human development. Each theorist tends to focus on a different part of development such as cognitive development or social development. As a result, there are many good diagnostic tools that can be used to determine your childs developmental level. These developmental tests should be administered by professionals and the results should be reviewed in conjunction with other assessments such as hearing tests, eye tests, EKGs, echocardiograms, CT scans, and a physical exam to confirm a diagnosis. There is a high incidence of Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD) among individuals with Fetal Alcohol Syndrome. Children with FAS may also exhibit delays in fine and/or gross motor skills and have speech disorders. FAS children show delays in reaching their developmental milestones. Many of the developmental disabilities and delays associated with FAS are not noticed until the child reaches school age. At that time they may appear to be lagging behind their peers, have trouble focusing in class, be considered disruptive, have trouble making friends, and have problems learning. The results of the developmental screening tools are often very helpful in determining a treatment plan for a child. An individualized education program is important for a child with FAS. The emphasis of this plan should be on practical goals and should include life skills. One thing is for certain, all children diagnosed with FAS will have some form of developmental delay, behavioral issues, and/or learning disabilities.

What are some common issues facing a child with FAS?

There are so many ways in which a child exposed to alcohol can be effected that it is virtually impossible to list them all. This list is not meant to be used as a diagnostic tool and it is not by any means a complete list. This list is just meant to give you a look at some of the typical symptoms associated with Fetal Alcohol Syndrome as well as a look at issues that parents of FAS children may have to deal with on a daily basis.

Lack of appropriate social behavior Increased startle response Manipulative behavior Attachment issues Demanding of parents time and attention Just doesnt get it, cluelessness Selective hearing Inability to follow directions Cant pass on messages Inability to make friends Attention problems Difficulty learning new tasks Acting out with over stimulation Withdrawal in unfamiliar situations Places self and others in harms way Likes to stir up chaos No cause and effect thinking

No sense of time Sleep problems Clumsiness Feeding issues Toileting issues Demanding Very intense Irritability Self mutilation Loud Hyperactivity Defiant Failure in school Poor eye contact Low IQ Hygiene issues Poor memory

Adults with Fetal Alcohol Syndrome

What are some common issues facing an adult with FAS?
The issues an adult with FAS may face can be more traumatic than those of a child. The general public is less tolerant of poor behavior in adults because they believe that an adult should know better. But the reality is that people with FAS dont know better and they cant know better. Many adults with fetal alcohol syndrome experience a range of symptoms and issues that follow them through life. A lack of appropriate social skills and poor cause and effect reasoning coupled with other common FAS symptoms can place an adult at risk of problems such as poor mental and physical health, employment difficulties and self destructive behaviors. The good news is that with the proper support, an adult with FAS can be a productive and successful individual.

Lack of social skills Inability to read body language Inability to understand and obey the laws Cant take care of personal finances Thrives in potentially dangerous situations Inability to tell time on an analog watch Unable to hold down a job Sexually inappropriate behavior Cant follow directions No resistance to peer pressure In your face personality Cant learn to use public transportation Likes living on the edge

Drug and alcohol abuse Memory problems Mental illness Inability to focus Forgets medications Easily confused Cant live independently Homelessness Manipulative behavior Lying and stealing Victimization Argumentative nature

The myths of Fetal Alcohol Syndrome

The birthmother of my child drank so the baby will have FAS.
Just because a mother drank, does not mean a child will have FAS. The major determining factor of an FAS diagnosis is if the mothers alcohol consumption caused facial deformities, growth retardation and defects in the central nervous system, developmental delays, or behavioral issues. The final diagnosis of FAS needs to be made by a trained professional.

I will be able to tell as soon as the baby is born if she has FAS.
Oftentimes it is hard to tell if a newborn has FAS. Many infants have similar facial features that have nothing to do with alcohol exposure but have to do with heredity, type of delivery and size of the child. In many cases it isnt until the child is a bit older, even toddler age, that FAS can be diagnosed because the diagnosis involves symptoms other than the facial features.

The birthmother drank alcohol but my child doesnt have FAS so she will be fine.
Just because a child does not have FAS does not mean that he will be fine. The effects of alcohol can be devastating on a childs developing brain and other organs. The child could have a multitude of problems from physical ailments to cognitive, emotional, behavioral and developmental issues. Also there have been cases noted where the mother did consume alcohol during pregnancy with no long-term effect on the child. These cases however are rare and should not be considered the norm. Any time you are considering adopting a child and you know that the mother consumed alcohol, you should be prepared to parent a child who has been damaged by the drinking.

There is nothing on the medical of my child that mentions the mothers use of alcohol so I shouldnt have to worry about FAS.
Unfortunately, many times the information received on children available for adoption can be inaccurate. Sometimes this important information is not passed along and sometimes the mother purposefully leaves the fact that she drank alcohol off of the information provided about the prenatal period. In some cultures, the effects of alcohol on a developing fetus is not known by the majority of women due to a lack of education on the subject so they may not realize that it is important to communicate the consumption of alcohol during pregnancy to a doctor, hospital, or orphanage. Sometimes the children are found abandoned and nothing at all is known about the parents or the child. This can make diagnosis of problems extremely difficult.

My child just has FAE so it wont be as bad.

Fetal Alcohol Effect (FAE) is not a mild case of FAS. The long-term effects can be just as disabling and just as difficult to deal with as a child with FAS.

It is better to adopt an FAS child as young as possible so he has every chance to get better.
Children with FAS dont get better. You cant fix all of their problems. While some of the physical defects, such as cleft palate, can be repaired, the brain can not be repaired. Research has shown that adopting a child at a young age can be beneficial because you have a greater chance to provide structure, nurturing, and opportunities for growth and development that may help the child to overcome difficulties later on in life. There is no proof or guarantee that a child with FAS adopted as an infant will be any more successful in life than a child with FAS adopted when they are older. The key to success seems to be a highly structured and consistent environment in which to live. The effects of alcohol will affect a person from birth until death.

Medications will make my FAS child behave.

While it is true that many children with FAS end up on some psychotropic medications to help with behavior management, there are many other challenges these children face that can not be controlled with medication. There is no magic FAS pill.

I just received a referral of a 10 year old little girl with FAS. I just dont see it in her face so the diagnosis must be wrong.
As a child ages, some of the fetal alcohol syndrome facial features may become less noticeable. As a body ages, the structure of the face may change, for example, the chin and nose may become elongated. This can change the entire look of a childs face. Using the face as a definitive diagnostic characteristic may no longer be a straightforward task.

I have adopted a child who was diagnosed with FAS so I have to make it work.
Parenting a child with FAS is not an easy task. Many adoptive parents jump into this without looking into the lifelong consequences of prenatal alcohol exposure. A structured and controlled environment is very important for a successful placement. Providing this structure in a normal family environment with other unaffected children is not an

easy thing to do. FAS children need to have different rules and consequences for their behavior that are different than those of a child without FAS. Parenting a child with FAS can be overwhelming. Seeking professional help and talking to other parents of FAS children may help a you to cope with this difficult situation. This support can be invaluable in making the placement successful. There are times when a placement is not successful and it is in the best interest of the child and the rest of the family to re-home the child. No parent should consider themselves a failure if they realize that they cant continue to parent a child with FAS. Many times friends and family dont understand why you would consider no longer parenting a child with FAS because they arent the ones living with the effects of FAS on a day to day basis. Professionals can help you to determine what is in the best interests of all parties involved.

3 WAYS TO TREAT FETAL ALCOHOL SYNDROME

Nov 18, 2009 | By Christa Gatewood

1. COPE WITH BEHAVIORAL PROBLEMS OF CHILDREN WITH FAS

Fetal alcohol syndrome (FAS) has no real cure or treatment, and the effects are lifelong. A recent study has shown that children who are diagnosed with FAS before the age of 6, however, can be protected from some of the later-life consequences (problems with law enforcement and mental institutionalization) by living in a supportive environment. If you are the parent of a child with a fetal alcohol syndrome diagnosis, you should work with a therapist to create a home environment that includes a consistent schedule, clear rules and positive reinforcement. Family counseling may be needed to help your family cope with some of the problems that arise from having a FAS child. Other children in the family may need added support in dealing with some of these challenges.

2. PROVIDE SPECIAL EDUCATION FOR LEARNING DISABILITIES

Children with fetal alcohol syndrome often have a difficult time in a school setting and typically have a variety of learning disabilities. Special educational services are often required to help these children with attention deficits as well as cognitive deficits. Additionally, therapy and counseling to develop social skills are usually required. Children with FAS are vulnerable to bullying and being taken advantage of in school because of poor social skills. Providing your child with opportunities to build self esteem and make his own decisions in protected environments can be beneficial.

3. TREAT ALCOHOLIC PREGNANT WOMEN WITH COUNSELING

Once a fetus has been damaged by alcohol exposure in utero, there is very little that can be done to reverse the damage. Most of the treatment for FAS revolves around treating pregnant women to prevent the disorder. Pregnant women need to be educated that any amount of alcohol while pregnant is unsafe

for their unborn children. Pregnant women with alcoholism should be treated for their addictions and continue treatment throughout the pregnancy to help stay away from alcohol.

At a glance:

First Published: 1989 Type of Work: Autobiography/Health Genres: Nonfiction, Autobiography Subjects: Psychology or psychologists, Authors or writers, New England,Alcoholism or alcoholics, Substance abuse, Native Americans or American Indians, Adoption or adopted children, Mental retardation,Anthropology or anthropologists, Learning disabilities

Locales: New Hampshire, South Dakota, Indian Reservation, SD At first glance, THE BROKEN CORD might appear to be a specialized study with limited appeal to the general reader, but that impression is quickly refuted: Any mother who ingests even moderate amounts of alcohol during pregnancy can produce an FAS child, and Dorris treatise is both a practical primer and an eloquent prose poem detailing a poignant and growing problem the ramifications of which are social and legal as well as medical. The solutions to halting the birth of FAS children and to providing for FAS victims lifelong care ultimately concern every reader. My son will forever travel through a moonless night with only the roar of wind for company, writes Dorris. A drowning man is not separated from the lust for air by a bridge of thought, he is one with it, and my son, conceived and grown in an ethanol bath, lives each day in the act of drowning. For him there is no shore. Indeed, Dorris son, Adam, exhibits all the characteristics of the classic FAS child, including significant growth retardation both before and after birth; 2) measurable mental deficit; 3) altered facial characteristics; 4) other physical abnormalities; 5) and documentation of maternal alcoholism. Yet because FAS and its companion FAE (fetal alcohol effect) are only recently recognized conditions, for years the cause of Adams learning difficulties remained misdiagnosed. Eventually Dorris role as an anthropologist and as the head of the Department of Native American Studies at Dartmouth University led him to work with specialists familiar with FAS and its devastating effect on Native American populations. Dorris learned that Adam is not unique; he discovered that Adam is one of thousands of such children born annually to women of every race and nationality who are themselves victims of poverty, ignorance, or low self-esteem. Dorris emphasizes that FAS may develop from an expectant mothers drinking as little as one cocktail or glass of wine or one can of beer a day, even on an irregular basis; the only insurance against FAS is total abstinence from alcohol consumption during pregnancy.

THE BROKEN CORD should help to draw national attention to this devastating syndrome and its long-term consequences. The book includes a foreword by Louise Erdrich and a final chapter by Adam, a touchingly unedited autobiography offered as a counterpoint and written at the suggestion of Adams dad

n 1973, The Lancet published two articles from a research team in Seattle on a topic that was named fetal alcohol syndrome (FAS). The claims of the articlesthat there is a specific set of pathological symptoms in infants whose mothers had drunk alcohol heavily during pregnancywon quick and broad acceptance, as did the naming of the syndrome. Janet Golden's Message in a Bottle is, as she puts it, a biography of a diagnosis: a brief sketch of the prehistory of thinking on alcohol and pregnancy, and a more detailed consideration of what happened, particularly in the USA, after the diagnosis was born. She takes a social constructionist perspective on the history: the meaning of the diagnosis was, she argues, shaped by cultural concerns, legal debates, medical authorities, media analyses, and political decisions. There had been previous observations of physical debilities of infants born to heavy-drinking parents. In 18th-century London, a Royal College of Physicians' petition to Parliament had noted that gin drinking by both sexes was too often the cause of weak, feeble, and distemper'd children, and a series of French reports between 1957 and 1968unknown in 1973 to the Seattle research teamhad pointed to the effects of alcohol on the fetus. Golden relates how the US discovery of FAS came at a time of heightened sensitivity to possible teratological effects, in the wake of the thalidomide tragedy, and at the inception of the National Institute on Alcohol Abuse and Alcoholism (NIAAA), which had a specific mandate for research into alcohol problems. As Golden details, the reports of FAS met initial resistance from the medical establishment, since they represented a reversal from the wet medical consensus after the failure of Prohibitiona consensus that alcohol did not have harmful effects on the fetus and was potentially beneficial during pregnancy. Golden might, however, have emphasised more that the FAS reports came along at a crucial juncture in the history of the NIAAA and the development of US thinking about alcohol. The postwar consensus between the alcohol industry and the new public authorities responsible for alcohol treatment had defined alcohol problems in terms of a small minority of alcoholics with an unknown genetic or personality defect. But this consensus was breaking down, and a new public-health perspective on the health effects of alcohol was emerging. In this context, the NIAAA leadership seized upon the diagnosis of FAS as a culturally powerful tool for moving toward the public-health framing of alcohol problems. By their own accounts, the then-NIAAA director and his successor were both pushed out of their positions as a result of pressure from the alcohol industry, before the NIAAA was scaled down to a less policy-oriented role.

Golden does explore perceptively the role and fate of FAS in US cultural politics in the ensuing decades. FAS had a leading role in the eventually successful fight for a warning label on alcoholic-drink containers. In a context of moral panic about crack babies, the issue of pregnancy policing appeared sporadically and efforts were made to prevent or deter alcohol consumption by expectant women. FAS was the battleground for an unsuccessful attempt to sue a manufacturer of alcoholic drinks for failure to warn about the effects of its product. And FAS became an argument that goes back to the womb in last-ditch efforts to overturn death penalties on criminals diagnosed as having been born with FAS. Golden's analysis includes substantial case studies on each of these issues, drawing on materials from diverse sources, including court records, media stories, the biomedical literature, and interviews with those involved. In her hands, FAS becomes to social science what dye is to microscopy, as Troy Duster once remarked about alcohol in general: something that reveals the structure of social life. Golden's is a model study of the wide-ranging sociocultural consequences that can follow the clinical identification and description of a new syndrome. Even in one country and in the short space of three decades the meaning of the syndrome was negotiated again and again, reflecting profound cultural ambivalence about women's obligations as mothers, about the status of the fetus, about personal responsibility, and about alcoholism. Her analysis does not take sides on whether the extent of social attention to FAS in the USA has been justified. So it is without comment that she notes those critical views that characterised attention to FAS as a moral panic, and the opposing position that led to the elaboration of a whole range of fuzzier diagnoses, such as fetal alcohol spectrum disorders and alcoholrelated neurodevelopmental disorders. Generally, then, Golden accepts the scientific record as given; her implicit model is that the social construction starts thereafter. But I would argue that the construction enters into the making of the scientific record. One issue left unsettled after 30 years, for example, is whether there is any damage to the fetus from occasional drinking in pregnancy. Professional judgments and advice on this differ from one society to another, even between cultures as close as the USA and the UK. In the USA, advice to pregnant women since 1981 has been for no drinking at all, whereas the advice to pregnant women in the UK from the Royal College of Obstetricians and Gynaecologists allows for the possibility of up to one standard drink per day. The consistent justification for the US stance has been that we don't know a safe level of drinking. But there has been little research on what a safe level might be, or just what are the risks of occasional drinking (with no binge spikes). The scientific agenda seems to be set by an implicit social policy judgment that the issue is better left unsettled: any answer other than zero would undercut the justification. Where the abstinence standard is established, even to raise public questions about it can invite wrath. Last year, for example, some of my colleagues questioned the wisdom of total abstention from alcohol during pregnancy in the Swedish newspaper Dagens Nyheter, arguing that the scientific support for this approach was weak and that there were other alcohol problems of much greater public-health importance. These comments by Jessica Palm, Sharon Rdner, and Kalle Tryggvesson drew a heated response coauthored by Markus Heilig, a leading Swedish biomedical researcher, who suggested that such arguments were inappropriate and belittled current efforts to tackle alcohol consumption during pregnancy.

For the individual person and family affected by FAS, the effects can be devastating, as Golden documents. And there are corners of the world where FAS is a problem at a population level. But in a broader public-health perspective, FAS does not loom large. WHO's comparative risk analysis, for example, estimates that maternal perinatal conditions account for 02% of all disability-adjusted life years lost because of drinking globally, and 01% in developed societies. These data cast a somewhat harsher light on Golden's story; it seems an irony that FAS has been so much a focus of US alcohol policies in the past three decades.

A generation has passed since a physician first noticed that women who drank heavily while pregnant gave birth to underweight infants with disturbing tell-tale characteristics. Women whose own mothers enjoyed martinis while pregnant now lost sleep over a bowl of rum raisin ice cream. In Message in a Bottle, Janet Golden charts the course of Fetal Alcohol Syndrome (FAS) through the courts, media, medical establishment, and public imagination. Long considered harmless during pregnancy (doctors even administered it intravenously during labor), alcohol, when consumed by pregnant women, increasingly appeared to be a potent teratogen and a pressing public health concern. Some clinicians recommended that women simply moderate alcohol consumption; others, however, claimed that there was no demonstrably safe level for a developing fetus, and called for complete abstinence. Even as the diagnosis gained acceptance and labels appeared on alcoholic beverages warning pregnant women of the danger, FAS began to be de-medicalized in some settings. More and more, FAS emerged in court cases as a viable defense for people charged with serious, even capital, crimes and their claims were rejected. Golden argues that the reaction to FAS was shaped by the struggle over womens relatively new abortion rights and the escalating media frenzy over "crack" babies. It was increasingly used as evidence of the moral decay found within marginalized communities--from inner-city neighborhoods to Indian reservations. With each reframing, FAS became a currency traded by politicians and political commentators, lawyers, public health professionals, and advocates for underrepresented minorities, each pursuing separate aims.

justin Scott sits at his dining room table dabbing pink frosting on a snowman sugar cookie and humming "Silent Night." The chaos of his young niece and nephew decorating their own cookies bubbles around him.

If the 20-year-old could sing to his family maybe he would. But Justin can't form the words to talk. His best communication is through jerky motions of American Sign Language. There are a lot of things Justin can't do. Developmentally disabled and cognitively about 6 years old, Justin is an adult face of fetal alcohol syndrome. That he has made it this long still awes his adoptive parents, Allan and Cheri Scott. He was considered a "successfully resuscitated miscarriage" on his birth papers when he was born three months early with a .237 blood alcohol level -- that's three times the legal limit for an adult driver. There are hundreds of young people like Justin in Alaska, and thousands more that don't look as if they have suffered damage from their mothers' drinking during pregnancy but show other telltale signs, the invisible disabilities -- the poor reasoning and judgment, the hyperactive behavior, the poor coordination. Alaska has one of the highest rates in the country of fetal alcohol syndrome and fetal alcohol spectrum disorders, an umbrella term that encompasses less severe cases than FAS. The rate in Alaska is five times higher than Arizona, for instance, and four times higher than New York, according to the Centers for Disease Control and Prevention. About 160 infants are born each year in Alaska with FAS or other effects from maternal alcohol use, according to state figures. Part of the reason for this is that Alaska has one of the highest rates of alcoholism in the country. Justin's biological mother was living in a tent near the Alaska Native Medical Center when she went into labor and a fellow homeless person told her to go to the nearby hospital. She was so intoxicated that it took her newborn 2-pound baby four days to dry out. Justin was her third child born with effects from her drinking. Justin's older sister would end up in a mental health facility. His other sibling ended up in the care of his mother's family. Justin's mother visited him while he was in the hospital for the months following his birth but either didn't want him or just couldn't care for him, so the state stepped in. She died when he was about 1 year old; her stomach hemorrhaged, a complication of her alcoholism. FAMILY ADDITION The Scotts took in Justin when he was just a baby. They were a medical foster family and had dealt with tough situations before. When he was 3 years old, they adopted him into their family of four -- Cheri, Allan, and their two biological children, teenagers at the time.

At first, taking care of Justin meant waking up every two hours to feed him. But with time, the Scotts learned to continue with their lives -- with Justin always near them, literally. When the Scotts take their Harley Davidson for a spin, Justin sits in a sidecar. Back in the dining room of his Hillside home, Justin and his niece, 9-year-old Rosebud, and his nephew, 4-year-old Curtis, listen to Cheri, a woman who strikes one like the type born to be a mom, with a soft voice and seemingly endless patience. She helps them choose among the different shaped cookies, including the Christmas tree, the candy cane or the airplane. Later, Justin will eat his dinner and take his shower before going to bed, but for now, this is the family fun. "Oh, Justin, you got a letter from Crystal!" Cheri says, getting right up close to Justin so he can see her in his vision, which is limited to about two feet away. She hands him the printed letter, highlighted in fluorescent pink. He looks at her and a smile crosses his face. He signs the word for "soft" using both hands. "Soft" is Justin's way of saying he likes something. Crystal is Justin's girlfriend, a 32-year-old woman with FAS who is cognitively about the same age as him. They met at an FAS camp three years ago. The pair see each other about twice a year and correspond often, both sets of parents helping them communicate. Their affection is usually limited to holding hands but once Justin did kiss her on the top of her head, Cheri said. Justin takes the letter and brings it close to his face to read, moving his head as he reads the lines. His joy is easy to see. "For us, we feel so lucky that they found each other," Cheri says. "They want a friend." Justin has learned to read and type through his Alternative Career Education program with the Anchorage School District, designed to help children like him to learn life skills. When he turns 22, Justin will transition from spending his days at school to a state-funded adult program through the Division of Vocational Rehabilitation. Living with FAS has drastically changed the lives of the Scotts. Cheri admits it hasn't been easy and often means she is taking care of Justin and not herself. But she's also learned a lot from her sensitive son, she says. He taught her not to raise her voice, and to treat others with kindness; if she doesn't, he senses it and will cry. "People treat him differently. They are gentle with him," says his father, Allan. "I think he brings that out in people." Allan, 57, an FAA employee, grew up in Nome. He already knew all too well about the destruction of alcohol before adopting Justin. "A lot of my cousins never made it to adults," he said. Drinking and snowmachining. Drinking and guns. Drinking and the frozen temperatures. They just don't mix, he said. Heather Amy Scott, now 34, says she felt like an adult too early when her parents adopted her brother. She was jaded and bitter and rebelled. But now she is one of his primary caregivers and she can't imagine him not being her brother. "He doesn't know any other family than us," she said.

The care Justin has received has, among other milestones, enabled him to progress from wheelchair to crutches. Today, he is able to walk with assistance. Or, as he often does, he usually makes his way around his split-level home by crawling and sliding on the wooden floors. When he's done with his cookies, Justin picks up a magnifying glass, moving it back and forth looking at his mother. He likes magnifying glasses, little fans, flashlights. The Scotts keep a supply of them around the house. He smiles, hand signals "soft" and pulls his mother close to him to touch noses. TACKLING THE PROBLEM Cheri Scott is now an active FAS educator, attending conferences around the country. She is an advocate, wanting more kids to have access to diagnostic tests to determine if they are suffering from some form of the fetal alcohol spectrum disorders. And, she wants expecting mothers to know that no amount of alcohol consumed during pregnancy is safe. In Alaska, 14 percent of women of childbearing age had been binge drinking within a month of a 2005 study, according to the CDCP. The total lifetime cost of providing services to an individual with FAS is estimated at $3.1 million. That includes medical costs, therapies and residential care. In 20 years, Justin has had 22 operations. The Scotts are assisted by the state and local charities, including the care of Catholic Social Services, which has been helping with Justin since 1987. The organization provides caregivers for Justin. With them, he swims at the Alaska Club, eats at the Village Inn and visits the Imaginarium. During the school year, caregivers spend about 15 hours a week with him. During the summer, they spend about 40. Caring for Justin costs the nonprofit about $40,000 a year. The money to pay for the care comes from Medicaid, grants, and donations. Cheri says if she could have one wish come true it would be to give her son a voice. She has a recurring dream in which Justin walks into her bedroom and says "Hi Mom," and just starts talking. But for now, the sound of him humming "Silent Night" gives her the joy she craves from her son.

Adults with fetal alcohol syndrome face huge challenges

by Tom Robertson, Minnesota Public Radio November 21, 2007 Listen to feature audio

When a pregnant woman drinks alcohol, she risks giving birth to a child with irreversible brain damage. But the problems associated with fetal alcohol exposure don't end when those children grow up. There are hundreds of thousands of adults across the country affected by a range of lingering disorders. Most of those adults have trouble living independently. They often have poor judgment and stunted social skills. Their unpredictable behavior can get them into serious trouble. Bemidji, Minn. There are very few places in the country that specialize in residential care for adults with fetal alcohol brain damage. That's what makes Westbrook farm west of Duluth so unique. It's a gorgeous setting -- 160 acres of rolling pastures and thick forests near the St. Louis River. The farm is home to eight young men struggling with the lasting effects of prenatal alcohol exposure. WITHOUT THE FARM, HE'D BE IN PRISON Two brown and white miniature horses nibble hay in the barn. Billy Nelson, 20, gently scratches their ears. Nelson considers the horses his friends -- and his therapy. "This one's Drummer and that one's Chance," says Nelson. "You can take them out in the yard and run with them, and they stay by your side. They're really nice horses."

Billy Nelson

Nelson has lived at Westbrook for about two years, but it was a rough road getting here. His mom was a drinker. He and his twin brother were born in St. Paul three and a half months premature. His brother died just a few weeks after birth. Nelson was placed in a series of foster homes, treatment centers and psychiatric care facilities. He was into drugs and alcohol, and was prone to violence. Nelson figures if he hadn't ended up at this farm, he'd probably be in prison. "I used to be crazy and all that when I first came here, but then I realized what my plan was to do on this earth before I pass on," says Nelson. "I need to take the punches and say, hey, just get my stuff together so I can move on in life and better myself. Because if you don't better yourself, you're not going nowhere." Westbrook farm was started five years ago by a Duluth nonprofit organization called Residential Services, Inc. The goal is to teach basic living skills to adults affected by fetal alcohol exposure, and help them live independently. It's a population that health advocates say is grossly underserved in this country. Studies show 90 percent have mental health problems, and 80 percent have trouble holding onto a job. EACH DAY IS UNPREDICTABLE Nelson and the others at Westbrook lack impulse control and have trouble understanding the consequences of their behaviors.

Travis Dombrovski, manager of Westbrook, says that means daily life on the farm is unpredictable and sometimes explosive. "They break things, and they yell and they scream and they swear, and they're hyper-sexual," Dombrovski says. "Assaults, sure, phones being thrown, lots of property destruction. It's got to be a helpless feeling. It's got to be scary and it's got to be hard to understand."

Travis Dombrovski

Dombrovski says Westbrook's residents have trouble learning from their mistakes, so instead of punishment, they face what he calls "natural consequences." For example, when someone gets angry and breaks something, they're required to fix or replace it. Despite evidence that punishment is ineffective on adults affected by fetal alcohol, some 60 percent of them will spend time behind bars. Dombrovski say society needs to take a different approach. "They don't need to be in jail. Jail is not the right place," says Dombrovski. "Sure, there might be structure, but there's no learning, there's no help, there's no support. And it's a waste of a human life, in my opinion, to leave them in jail. They can come out. They can make it." There's typically a long waiting list to get into Westbrook. Residents are usually referred there by county social service agencies, which pay the costs through foster care and other program funds. The residents start out living in the main farmhouse, where life is highly structured. They're assigned daily chores. They learn how to cook and clean and take care of themselves. They tend to the farm animals and work in the garden. Then, when they're ready, they can graduate to more independent living in an apartment building just across the yard. Billy Nelson says he's ready to move into one of those apartments. For the first time in his life, he's set some goals for himself. He wants to earn his GED, and would someday like to study climatology. Nelson says Westbrook has given him a confidence he's never had before. "Trust was a big issue when I first came here," says Nelson. "I didn't trust no one. Not even myself. Didn't believe in myself. But now I do believe in myself. And I know I can do whatever I want to, as long as I put my head to it." NO SAFETY NET FOR ADULTS Helping alcohol-exposed children grow into adults can be a nightmare for parents. Jodee Kulp lives in a western Twin Cities suburb, where she and her husband raised their adopted daughter, Liz, who's now 21 years old. Kulp says people with more visible disabilities have clear safety nets, but for young adults with fetal alcohol syndrome, getting help can be a struggle.

The Kulp family

"The rule is, fail first. And failing first is very painful," says Kulp. "It's very painful as a parent to watch your child fail. It's very painful to watch your child fail over and over and over again." Like many people with fetal alcohol brain damage, Liz has trouble managing her money. She's gone into treatment twice for alcohol abuse. Liz says when she first moved out on her own at age 18, one of her biggest problems was housing. She says people took advantage of her. "I had basically a party house where friends wouldn't leave," Liz says. "By me just inviting maybe one person, they invite whoever else. But they wouldn't leave and then I didn't know what to do, and eventually got kicked out of a lot of apartments." In all, Liz was booted from nine apartments in just two years. Her mother says Liz tried to do the right thing, but just wasn't capable.

Jodee Kulp

"For a long time, I felt like I was swimming in the sharks, running around from place to place trying to save her and help her, and try to teach her and help her learn," says Jodee Kulp. "And then finally you look at the situation and say, you know what, in order for her to get services, I've just got to let her fail. And then you just go on your knees, because that's the only option you've got is to just let it happen." Kulp's daughter eventually qualified for disability services. Liz gets financial help with her rent. The county provides Liz with a job coach to help her find work. She's managed to keep the same apartment for almost a year. Liz says she still struggles just to contain her emotions. She says little things will irritate her and she can feel the anger welling up in her body. Sometimes it turns into a meltdown, and Liz says things she doesn't mean. "I can get out of hand. I've calmed down a little bit, but I tend to break things," says Liz. "And people all turn their head and I get frustrated and I yell at them all, because I don't like it when people stare me down. It frustrates me, because they look at me like I'm crazy or something. It's just that I'm frustrated and I don't know how to maintain, and I'm just like, breaking out of my own skin."
"I look at [fetal alcohol syndrome] as a wicked fountain of youth. Nobody acts the age that they appear to be. You are forever a child." - Monica Adams, an adult with FASD

Jodee Kulp quit her job years ago to devote her life to helping Liz succeed. She helped Liz write a book about what it's like to live with fetal alcohol damage. Liz is now working on a second book focusing on the challenges of making the transition to adult life. Jodee and Liz work together to raise awareness of the disorder. "The first thing we need to do is we need to change our frame of reference, which is realizing they have a brain injury," says Jodee Kulp. "Once we understand that we're dealing with a brain injury, we start working with the population in a different way... The idea is to build a national voice for persons with fetal alcohol."

What's most difficult for Liz's dad, Karl Kulp, is to not blame Liz for her bad behavior. Karl says he still has to remind himself that Liz can't help it because her brain is damaged. Karl says the future is too far ahead to even consider that Liz could someday become a productive adult. "We're immensely gratified that Liz is alive at 21," Karl says. "There were so many ways, and there have been so many instances along the way, where it could have gone the other way and she may not have survived. And it isn't clear yet whether she's going to make 22. She just doesn't have the brain function to guide herself in the right way all the time. So she makes a lot more mistakes." MAKING IT WORK -- WITH HELP FROM OTHERS Some adults with fetal alcohol damage are doing their best to lead productive lives. Monica Adams is assistant manager of a women's clothing store in a Twin Cities suburb. "Is there anything I can get for anyone?" says Adams to several customers. "Just looking? OK. If you have any questions, don't hesitate to ask."

Monica at work

Adams, 37, has gone through two failed marriages. Now she's moved back in with her adoptive parents. Adams says she struggled all her life to fit in and understand the world around her. She sucked her thumb habitually until fifth grade. She had no concept of money or time, and school was always frustrating. "A lot of things I just flat out didn't understand," says Adams. "I mean, a teacher would be talking and I'm like, what in the world is coming out of her mouth? Everybody else seemed to know. I was always the 'day late' person, always asking the person next to me. I feel like I got more of an education adopting to my surroundings than I ever did learning the ABCs, because I had to." Adams says she's learned to adapt to her disability with strong support from family, friends and an employer who's willing to put up with her faults. Her boss, store manager Mary Harrell, says she knew a little about fetal alcohol syndrome before Adams told her she had it. Harrell says she and the other store employees are willing to work around Adam's sometimes inconsistent behavior.

Monica and her boss

"Probably the area that I see it the most is the disorganization part of it. We just all work with it," says Harrell. "If we have to clean up after her or, you know, pick things up or rearrange things, I'm willing to sacrifice that, because she's just an incredibly talented, creative person and is great with customers. I guess in any job you're going to have people that do certain things better than others." Adams says she has a short fuse and works hard to keep her emotions in check. One of her biggest challenges is managing money, and trouble with short-term memory makes that even tougher.

Sometimes she forgets to pay bills, though she's gotten better. She says she's lost track of how many times she's had her driver's license suspended for forgetting to pay insurance or renew her license tabs. "I mean seriously, if I were to rack up collective damages from fines -- I'm talking everything from legal system fines to credit card debts to cell phone bills, long distance bills -- I'm talking well over $10,000," says Adams. A 'WICKED FOUNTAIN OF YOUTH' Adams has become an advocate for others with fetal alcohol brain damage. She's on an advisory board for the Minnesota Organization on Fetal Alcohol Syndrome, and speaks to other young women who are struggling to become adults. Adams says she used to wonder what she might have become had her biological mother not drunk alcohol while she was pregnant. Now, she just focuses on keeping her life together, and accepting the times when that's not possible. "People say, 'Oh, you seem so normal. You don't act like you have it,'" says Adams, "and then the next month, I can do something that seems so hare-brained stupid, you can't believe I'm capable of doing that." Health advocates say that, emotionally, people with fetal alcohol damage often function at half their age. Adams says that's true for her. She says she's figured out how to function as an adult, but she knows that part of her will always be a vulnerable little girl. "I look at it as kind of a wicked fountain of youth," she says. "Nobody ever looks the age that they appear to be. Nobody acts the age that they appear to be. You are forever a child." For now, Monica's answer is living at home with her folks. But that doesn't work for everyone.

Primary disabilities The primary disabilities of FAS are the functional difficulties with which the child is born as a result of CNS damage due to prenatal alcohol exposure.[11] Often, primary disabilities are mistaken as behavior problems, but the underlying CNS damage is the originating source of a functional difficulty[54] (rather than a mental health condition, which is considered a secondary disability).

The exact mechanisms for functional problems of primary disabilities are not always fully understood, but animal studies have begun to shed light on some correlates between functional problems and brain structures damaged by prenatal alcohol exposure.[7] Representative examples include:

Learning impairments are associated with impaired dendrites of the hippocampus[55] Impaired motor development and functioning are associated with reduced size of the cerebellum[56] Hyperactivity is associated with decreased size of the corpus callosum[57] Functional difficulties may result from CNS damage in more than one domain, but common functional difficulties by domain include:[7][49][51][54] (This is not an exhaustive list of difficulties.)

Achievement Learning disabilities Adaptive behavior Poor impulse control, poor personal boundaries, poor anger management, stubbornness, intrusive behavior, too friendly with strangers, poor daily living skills, developmental delays Attention Attention-Deficit/Hyperactivity Disorder (ADHD), poor attention or concentration, distractible Cognition Mental retardation, confusion under pressure, poor abstract skills, difficulty distinguishing between fantasy and reality, slower cognitive processing Executive functioning Poor judgment, Information-processing disorder, poor at perceiving patterns, poor cause and effect reasoning, inconsistent at linking words to actions, poor generalization ability Language Expressive or receptive language disorders, grasp parts but not whole concepts, lack understanding of metaphor, idioms, or sarcasm Memory Poor short-term memory, inconsistent memory and knowledge base Motor skills Poor handwriting, poor fine motor skills, poor gross motor skills, delayed motor skill development (e.g., riding a bicycle at appropriate age) Sensory integration and soft neurological problems sensory integration dysfunction, sensory defensiveness, undersensitivity to stimulation Social communication Intrude into conversations, inability to read nonverbal or social cues, "chatty" but without substance [edit]Secondary disabilities The secondary disabilities of FAS are those that arise later in life secondary to CNS damage. These disabilities often emerge over time due to a mismatch between the primary disabilities and environmental expectations; secondary disabilities can be ameliorated with early interventions and appropriate supportive services.[11]

Six main secondary disabilities were identified in a University of Washington research study of 473 subjects diagnosed with FAS, PFAS (partial fetal alcohol syndrome), and ARND (alcoholrelated neurodevelopmental disorder):[7][11]

Mental health problems Diagnosed with ADHD, Clinical Depression, or other mental illness, experienced by over 90% of the subjects Disrupted school experience Suspended or expelled from school or dropped out of school, experienced by 60% of the subjects (age 12 and older) Trouble with the law Charged or convicted with a crime, experienced by 60% of the subjects (age 12 and older) Confinement For inpatient psychiatric care, inpatient chemical dependency care, or incarcerated for a crime, experienced by about 50% of the subjects (age 12 and older) Inappropriate sexual behavior Sexual advances, sexual touching, or promiscuity, experienced by about 50% of the subjects (age 12 and older) Alcohol and drug problems Abuse or dependency, experienced by 35% of the subjects (age 12 and older) Two additional secondary disabilities exist for adult patients:[7][11]

Dependent living Group home, living with family or friends, or some sort of assisted living, experienced by 80% of the subjects (age 21 and older) Problems with employment Required ongoing job training or coaching, could not keep a job, unemployed, experienced by 80% of the subjects (age 21 and older) [edit]Protective factors and strengths Eight factors were identified in the same study as universal protective factors that reduced the incidence rate of the secondary disabilities:

Living in a stable and nurturant home for over 73% of life Being diagnosed with FAS before age six Never having experienced violence Remaining in each living situation for at least 2.8 years Experiencing a "good quality home" (meeting 10 or more defined qualities) from age 8 to 12 years old Having been found eligible for developmental disability (DD) services

Having basic needs met for at least 13% of life Having a diagnosis of FAS (rather than another FASD condition) Malbin (2002) has identified the following areas of interests and talents as strengths that often stand out for those with FASD and should be utilized, like any strength, in treatment planning

Music, playing instruments, composing, singing, art, spelling, reading, computers, mechanics, woodworking, skilled vocations (welding, electrician, etc.), writing, poetry