FETAL ALCOHOL SPECTRUM DISORDERS

FETAL ALCOHOL SPECTRUM DISORDERS
DRAFT FETAL ALCOHOL SPECTRUM DISORDERS The Basics These slides are an educational program that will provide the latest and most accurate information on Fetal Alcohol Spectrum Disorders (FASD). Because these slides are geared toward beginner sessions, presenters may face questions they are not prepared to answer. Further information is available through the FASD Center’s Information Resource Center, STOPFAS ( ) or In addition, users may request training from the FASD Center by contacting the Information Resource Center or completing the the online form at fascenter.samhsa.gov/resource/ta/trainingassistance.cfm.

Understanding Fetal Alcohol Spectrum Disorders
This section includes: Fetal Alcohol Spectrum Disorders (FASD) Terminology FASD Facts Cause of FASD FASD and the Brain Number of People With an FASD

Fetal Alcohol Spectrum Disorders (FASD)
Umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy May include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications Not a diagnosis + Fetal alcohol spectrum disorders (FASD): The term “FASD” indicates that there are a variety of effects of prenatal alcohol exposure. FASD is not a diagnosis. Although the various fetal alcohol spectrum disorders are permanent conditions, specific symptoms may be treatable or manageable. Thus, the definition notes possible lifelong implications, depending on the specific nature of the disorder and the individual affected. “FASD” is one of the newer terms introduced to this field, and there is not universal agreement on how or when to use it. Canada uses the singular term “fetal alcohol spectrum disorder,” and the United States uses the plural “disorders.” However, both view FASD as a descriptive term and not a diagnostic term. This definition of FASD was agreed on in April 2004 by a group of national experts representing the Centers for Disease Control and Prevention (CDC); the National Institute on Alcohol Abuse and Alcoholism (NIAAA); the Substance Abuse and Mental Health Services Administration (SAMHSA); Health Canada; and the fields of research, psychiatry, and justice. The meeting was facilitated by the National Organization on Fetal Alcohol Syndrome (NOFAS). Image source - beer:

Terminology Fetal alcohol syndrome
Term first used in 1973 by Drs. Smith and Jones at the University of Washington One of the diagnoses used to describe birth defects caused by alcohol use while pregnant A medical diagnosis (760.71) in the International Classification of Diseases (ICD) FAS is the most commonly recognized term. However, it only represents one group of individuals affected by prenatal alcohol exposure. Fetal Alcohol Syndrome (FAS): This term was first used in 1973 by Dr. David Smith and Dr. Kenneth Lyons Jones at the University of Washington to describe a small group of children who had similar patterns of facial features, growth deficiency, central nervous system dysfunction, and mothers who drank heavily during pregnancy. They remarked that these children looked as though they were related, but they were not. When this term was coined, Drs. Smith and Jones said that it was a diagnosis for two (the child and the mother). This term reflects the cause of the difficulties, rather than the symptoms. The International Classification of Diseases (ICD) is a codebook for all medical conditions. The only specific term in the ICD related to prenatal alcohol exposure is “fetal alcohol syndrome.”

Terminology Fetal alcohol effects (FAE)
Pregnancy Alcohol Fetal alcohol effects (FAE) Alcohol-related birth defects (ARBD) Alcohol-related neurodevelopmental disorder (ARND) Partial FAS (pFAS) + There is no consensus in the United States on the terms for the diagnostic descriptions of the effects of prenatal alcohol exposure other than FAS. Some people use FAS, some use FAS and FAE, some use FAS and ARND, some use FAS and ARBD, and some use pFAS. CDC has convened a working group of experts in the field to work toward agreed-on terminology. Fetal alcohol effects (FAE): Drs. Smith and Jones coined this term to describe a small group of children who had similar patterns of cognitive difficulties, growth deficiencies, and mothers who drank heavily during pregnancy but did not have the distinctive facial features seen in FAS. Alcohol-related birth defects (ARBD): The Institute of Medicine created this term in its 1996 volume on FAS to describe physical anomalies only. Alcohol-related neurodevelopmental disorder (ARND): The Institute of Medicine created this term to refer to neurodevelopmental abnormalities or a complex pattern of behavior or cognitive abnormalities inconsistent with developmental level that cannot be explained by family background or environment alone. Partial FAS (pFAS): The Institute of Medicine also coined this term in its 1996 report on FAS. The term refers to children who have some of the facial features of FAS, along with evidence of growth retardation, neurodevelopmental abnormalities, or a complex pattern of behavior or cognitive abnormalities inconsistent with developmental level that cannot be explained by family background or environment alone. Image source – Image source - pregnant woman: May result in

FASD Facts 100 percent preventable
Leading known cause of preventable mental retardation Not caused on purpose Can occur anywhere and anytime pregnant women drink Not caused by biologic father’s alcohol use Not a new disorder FASD is 100 percent preventable. It is one of the major reasons to focus on prevention. Fetal alcohol spectrum disorders are some of the few totally preventable birth defects. FAS is the leading known cause of preventable mental retardation (Abel and Sokol, 1986; Stratton, et al., 1996). It is more common than Down syndrome or any other known cause of mental retardation. Therefore, many people may associate FAS with mental retardation and think, “My child or I don’t have mental retardation, so he/she/I can’t have FAS.” Providers may think, “I don’t work with people with mental retardation, so I won’t see any FAS.” This association has affected FAS cost estimates, because costs of residential care for FAS only include residential care for mental retardation. Most individuals affected by prenatal alcohol exposure do not have mental retardation. (This is discussed later.) Women do not set out to harm their children. That is not why pregnant women drink. Some State legislatures are considering passing laws or have passed laws that allow incarceration of women who drink or use drugs during pregnancy. However, these measures will not help women without providing appropriate treatment and will also discourage women from talking about their alcohol use. This is especially true if they fear losing custody of their children. Image source - alcohol:

Cause of FASD The sole cause of FASD is women drinking alcoholic beverages during pregnancy. Alcohol is a teratogen. “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.” —IOM Report to Congress, 1996 . The cause of FASD is a woman drinking alcohol during her pregnancy. The direct effects of alcohol on the developing fetus cause the difficulties seen in FASD. Dr. Paul Lemoine in France followed women who had given birth to children with what he called alcoholic embryopathy and found that those who stopped drinking and then got pregnant gave birth to children with no evidence of alcoholic embryopathy. Alcohol is a teratogen: A teratogen is a substance that might interfere with the normal development of a fetus. There are many teratogens in the world, including substances of abuse, lead, certain medications, and toxins. However, of all the substances of abuse that women might use during pregnancy, alcohol has the most serious, long-lasting effects. It is also the most common teratogen used by women during pregnancy.

FASD and Alcohol All alcoholic beverages are harmful.
Binge drinking is especially harmful. There is no proven safe amount of alcohol use during pregnancy. Any alcohol consumed by a pregnant woman can be harmful to the fetus, regardless of the form it takes (beer, wine, liquor, etc.). Binge drinking: In February 2004, a National Advisory Council of the National Institute on Alcohol Abuse and Alcoholism (NIAAA) defined binge drinking as “a pattern of drinking alcohol that brings blood alcohol concentration (BAC) to 0.08 gram percent or above. For the typical adult, this pattern corresponds to consuming 5 or more drinks (male), or 4 or more drinks (female), in about 2 hours. Binge drinking is clearly dangerous for the drinker and for society.” Studies have found that binge drinking may be more harmful to the fetus than ongoing drinking of a lower quantity (Maier & West, 2001; Streissguth, et al., 1990). When the mother consumes alcohol, the baby’s blood alcohol level reaches levels as high or higher than the mother’s. Thus, consuming large amounts of alcohol in a short period could be particularly damaging to the developing fetus. No proven safe amount of alcohol use during pregnancy: Although no data show that a drink a day causes FAS, there is no proof that a drink a day, or any given amount of alcohol, will have no effects on a specific developing fetus. Each person absorbs and metabolizes alcohol differently. There is some current research on the identification of gene alleles that may increase or decrease the degree of effect of a given amount of alcohol on a fetus (Stoler, 2002; Viljoen, et al., 2001). Therefore, although it is not known whether any given amount of alcohol will result in the birth of a child with a fetal alcohol spectrum disorder, the only definitely safe amount of alcohol to use during pregnancy is none.

FASD and the Brain Prenatal alcohol exposure causes brain damage.
Effects of FASD last a lifetime. People with an FASD can grow, improve, and function well in life with proper support. Prenatal alcohol exposure causes brain damage. Some teratogens may only affect one aspect of the developing fetus (e.g., thalidomide, which affects the developing limbs during the first trimester in particular). However, alcohol affects multiple systems and especially targets the brain, which develops throughout pregnancy. Alcohol can cause damage to the developing brain in a number of ways, including early cell death and faulty migration of cells within the brain. The effects of FASD last a lifetime. Because alcohol damages the brain, a fetal alcohol spectrum disorder does not resolve at age 12, 18, 21, 35, or 55. It is a lifelong disability. People with an FASD can grow, improve, and function well in life with proper support. Many will need the support of others to function optimally. However, everyone with a fetal alcohol spectrum disorder will not need the same amount of support in the same way. This is not a hopeless problem. With proper recognition and treatment, people with an FASD can have productive and satisfying lives.

FAS and the Brain Prenatal alcohol exposure causes brain damage. Alcohol can damage the developing brain in a number of ways. The brain may be smaller than normal or may have missing or underdeveloped portions, such as the corpus callosum. The picture on the right is an autopsy photo of an infant with FAS so severe that it was fatal. Most people with FAS do not have brains that are this dramatically affected.

FAS and the Brain A B C A B C Corpus Callosum: The corpus callosum connects the two hemispheres of the brain, allowing the left and right sides to communicate with each other. Prenatal alcohol exposure can cause thinning or complete absence of the corpus callosum. These abnormalities have been linked to deficits in attention, intellectual function, reading, learning, verbal memory, and executive and psychosocial functioning. A. Magnetic resonance imaging showing the side view of a 14-year-old control subject with a normal corpus callosum; B. 12-year-old with FAS and a thin corpus callosum; C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.

FAS and the Brain A Agenesis is the lack or failure of development of a body part. These two images are of the brain of a 9-year-old girl with FAS. She has agenesis of the corpus callosum, and the large dark area in the back of her brain above the cerebellum is essentially empty space. Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.

Number of People With an FASD
No one knows for certain how many individuals are born each year with an FASD. No one knows how many individuals are living with an FASD. Accurate incidence rates for FASD are unavailable. The reasons are that the various types of fetal alcohol spectrum disorders (e.g., FAS) are not regularly diagnosed, few physicians feel comfortable diagnosing the specific types of disorders, and no general agreement has been reached on how to diagnose specific disorders. However, a number of incidence studies have been conducted. Prevalence and Incidence in FAS Studies: “Prevalence” is used to describe the frequency of occurrence or presence of FASD among the study population and any subgroups within the population at all time periods during the lifespan. In the context of FAS, some researchers use the term “incidence” to describe new cases of FASD (e.g., births) each year and use the term “prevalence” to indicate the rate of FASD cases within age categories beyond birth or the first year (May and Gossage, 2001).

Symptoms and Difficulties of FASD
This section includes: Overall Difficulties in Persons With an FASD Primary Disabilities in Persons With an FASD Typical Difficulties for Persons With an FASD Secondary Disabilities in Persons With an FASD Factors That Reduce Secondary Disabilities Not everyone with an FASD has all the difficulties described here.

Overall Difficulties for Persons With an FASD
Information Taking in information Storing information Recalling information when necessary Using information appropriately in a specific situation Individuals with an FASD experience difficulties in all these areas. They may not be able to take all the information given to them into their brain. If they take it in (i.e., can repeat what they were told), they may have difficulty storing it, so they forget it after a short time. If they store it, they might have difficulty recalling it when they need it. They may have learned the rules that include doing their chores on Thursdays, but on Thursday, they do not recall that they need to do chores. Even if they can recall the information, they may have difficulty recognizing how to use the information in a given situation. These problems are not unique to FASD and may occur with other disabilities. There is no established checklist of behaviors unique to fetal alcohol spectrum disorders. These problems can occur in individuals whose mothers did not drink while pregnant.

Primary Disabilities in Persons With an FASD
Lower IQ Impaired ability in reading, spelling, and arithmetic Lower level of adaptive functioning; more significantly impaired than IQ Primary disabilities are characteristics or behaviors that reflect differences in brain structure and function, such as mental retardation, attention deficits, and sensory integration dysfunction. Secondary disabilities are disabilities that the individual is not born with. These disabilities and behaviors develop over time because of a poor fit between the person and the environment. A study by Ann Streissguth, et al., identified a number of primary disabilities in persons with an FASD. For example, in the study, persons with FAS had an average IQ of 79. Persons with FAE had an average IQ of 90. The average IQ in persons without neurologic disorders or brain damage is 100. Adaptive functioning is defined as the ability of an individual to independently cope with common life demands in areas such as communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, academic skills, work, leisure, health, and safety. Age 21: Graduation from high school Photo courtesy of Streissguth, et al. (1996)

Typical Difficulties for Persons With an FASD
Sensory Integration Issues Are overly sensitive to sensory input Upset by bright lights or loud noises Annoyed by tags in shirts or seams in socks Bothered by certain textures of food Have problems sensing where their body is in space (i.e., clumsy) Sensory integration refers to the way the body responds to external stimuli to the senses (sight, hearing, smell, touch, taste). Persons with an FASD may have sensory integration problems, making them over- or understimulated. They may flinch at the slightest touch or perceive it as an attack and lash out. They may refuse to eat certain foods or wear certain clothes. Conversely, they may hurt themselves because they do not feel pain, such as when touching a hot stove, or dress inappropriately for the weather because they do not feel cold. Persons with sensory integration issues can also be clumsy because they have problems sensing where they are in space. They may bump into other people or into objects.

Memory Problems Multiplication Time sequencing ? Persons with an FASD may have problems with tasks that involve recalling information, such as using multiplication tables. They also may have trouble with tasks that require use of working memory, such as following a sequence of events. They may forget the first event by the time they get to the last.

Information Processing Problems Do not complete tasks or chores and may appear to be oppositional Have trouble determining what to do in a given situation Do not ask questions because they want to fit in Information processing refers to the way the brain stores, organizes, recalls, and uses information. Appear to be oppositional: A person with an FASD may refuse to do something or simply not do it, especially if given multiple tasks. For example, a child may be told, “Go to your room, put your dirty clothes in the hamper, fold the clean clothes and put them away, and make your bed.” The child does not follow through, because he or she cannot remember what to do. Trouble determining what to do in a given situation: Persons with an FASD have problems applying information. For example, Jimmy has an FASD and learns not to talk to strangers. He then refuses to talk to his substitute teacher because he does not know her. Another example is that people with an FASD know that when they are with their friends on the weekends, they can dress casually and talk in slang. Then they do the same when they are in school or on the job. Do not ask questions: Persons with an FASD recognize that there is something different about them but do not want others to know, so they do not ask for help when they need it. The reasons include: They want to fit in. They do not want people to know there is something wrong with them. They do not know what questions to ask.

Information Processing Problems Say they understand when they do not Have verbal expressive skills that often exceed their level of understanding Misinterpret others’ words, actions, or body movements Have trouble following multiple directions Straighten up your room and put your toys away. Do you understand? YES! (How do you straighten up? Make sure the bed/chair is straight?) Say they understand when they do not: People, especially adolescents, want to be like everyone else and not be seen as different. They may not want to let on that they have difficulty with what is being told to them, so they will say that they understand. Thus, they can feel that they are doing things by choice and are in control, rather than saying that they do not know what to do. In addition, they may think that they understand at the moment, but later on do not know or remember what they were told. Verbal receptive language skills are more impaired than expressive skills: Individuals with an FASD are often very talkative. They have more difficulty accurately taking in verbal information and processing it accurately than they do expressing themselves. Much of education is auditory learning, which can be particularly difficult for those with an FASD. Misinterpret others’ words, actions, and body movements: People with an FASD may see someone staring at them and think that the person is planning to attack them. Someone might be having a bad day, and they might think the person is mad at them. Also, idiomatic expressions, metaphors, and similes can be misinterpreted when people process information very literally. For example, someone says, “We are all in the same boat,” and the person with an FASD responds, “I don’t see any boats.” Multiple directions: Individuals with an FASD typically have difficulty following multiple directions, but people commonly give more than one direction at a time.

Executive Function Deficits Go with strangers Repeatedly break the rules Do not learn from mistakes or natural consequences Frequently do not respond to point, level, or sticker systems Have trouble with time and money Give in to peer pressure I’m late! I’m late! Executive function refers to areas such as planning and problem solving that enable people to cope with the tasks and demands of everyday life. Go with strangers: Young children with an FASD lack stranger anxiety. As children, adolescents, and adults, persons with an FASD may go with people they do not know and get hurt. Repeatedly break the rules: Individuals with an FASD often do not know the rules or do not remember the rules when they need to. Most often, persons are given a list of rules, which people with an FASD will often have difficulty following. They lack the ability to apply rules to various situations. Do not learn from their mistakes: Individuals with an FASD often have difficulty understanding cause and effect. Therefore, they may repeat behaviors that have gotten them into trouble. The natural consequences of some mistakes, such as eviction for not paying rent, could place the individual in dangerous situations. Do not respond to point or level systems: Most programs in various systems of care use some type of point, level, or sticker system. Individuals with an FASD will often be on the lowest level or have the fewest points, yet they will frequently be the ones to say that they want to do well. The concept of time: Historical time and future time are abstract concepts that are difficult to grasp due to the effects of prenatal alcohol exposure. Persons with an FASD have problems understanding concepts such as the idea of a future consequence for a present behavior or a present consequence for an earlier act. They also may not understand that if an appointment is at 2:00 and is 1 hour away, they need to leave at 1:00. The concept of money: It is difficult for individuals with an FASD to understand that if they spend all their money when they get it, they will not be able to pay their rent or buy food in a week or two. They may spend whatever money they have without being able to consider what they might need a day or a week later. Peer pressure: Persons with an FASD are very naïve and gullible. They believe what others tell them and often do what others tell them to do. In addition, since they want so much to have friends, they will often follow others.

Self-Esteem and Personal Issues Function unevenly in school, work, and development Experience multiple losses Are seen as lazy, uncooperative, and unmotivated Have hygiene problems Uneven: It is not unusual for an individual with a fetal alcohol spectrum disorder to do well one day and poorly the next or to remember to do something one day and not the next. Experience losses: All individuals with an FASD have experienced losses in their lives. The fact that they are not like their peers is a loss of the ability to be like everyone else. Some have the loss of the hopes and dreams of what they wanted to be. Others lose their family or a secure future. These losses can affect people in many ways and need to be addressed. Have hygiene problems: Persons with an FASD have difficulty maintaining good hygiene. They may not know how to keep themselves clean. They may not recognize when they are wearing dirty or stained clothes. They may take a shower or bath and then put dirty clothes back on. They may take off dirty clothes, put them in the pile with their clean clothes, and then pick up clothes to wear from that pile. The natural consequences approach is to tell them that if they go out looking or smelling dirty, people will not want to be their friends. However, saying this will just make them feel worse about themselves.

Typical Difficulties for Individuals With an FASD
Multiple Issues Cannot entertain themselves Have trouble changing tasks Do not accurately pick up social cues Cannot entertain themselves: Persons with an FASD are easily bored. They have difficulty choosing something to do on their own and sticking to it. As children, they can go to their room filled with toys and come back 5 or 10 minutes later saying that they are bored and have nothing to do. Have trouble changing tasks: It is difficult for many people with an FASD to change tasks, especially often. Changing tasks is something that often occurs at home, at school, and in job settings. Do not accurately pick up social cues: It is difficult for individuals with an FASD to correctly assess social situations. If they misread a social interaction, they could be perceived as being different, rude, intrusive, or uninterested.

Secondary Disabilities in Persons With an FASD
Mental health issues Disrupted school experience Trouble with the law Inappropriate sexual behavior Confinement in jail or treatment facilities Alcohol and drug problems Dependent living Employment problems Secondary disabilities are problems that result from the primary disability but are not directly caused by it. For example, prenatal alcohol exposure can cause attention deficits that interfere with schoolwork. The attention deficits are a primary disability. The academic problem is a secondary disability. The University of Washington conducted a secondary disabilities study with funding from CDC. The 4-year study examined 415 individuals with FAS or FAE who had been through the university’s clinic. They ranged in age from 6 to 51 years. In addition to having primary disabilities (FAS or FAE), a significant proportion of these individuals experienced secondary disabilities. There might be many reasons for these disabilities, including environment and how the individual processes information. This is only one study, and it did not include a control group. More research is needed on secondary disabilities. Of the individuals identified with secondary disabilities: 94 percent had mental health issues. 43 percent had disrupted school experiences. 60 percent of those age 12 and older had trouble with the law. 50 percent experienced confinement in jail or treatment facilities. 45 percent engaged in inappropriate sexual behavior. 24 percent of adolescents, 46 percent of adults, and 35 percent overall had alcohol and drug problems. 83 percent of adults experienced dependent living. 79 percent of adults had employment problems. Streissguth, et al. (1996)

Secondary Disabilities in Persons With an FASD
Percent of Persons With FAS or FAE Who Had Secondary Disabilities Source: Streissguth, A.P.; Barr, H.M.; Kogan, J.; et al Final Report: Understanding the Occurrence of Secondary Disabilities in Clients With Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Seattle: University of Washington Publication Services. In certain areas, adolescents and adults experience problems more than children. In the Streissguth, et al., study, more than 60 percent of those ages had disrupted school experiences and nearly 60 percent of those ages had disrupted school experiences. Similarly, only about 15 percent of those ages 6-11 had trouble with the law, while about 60 percent of those ages had trouble with the law. In addition, alcohol and drug problems tended to manifest later; 24 percent of adolescents had alcohol and drug problems, while 46 percent of adults had alcohol and drug problems. Finally, 8 percent of children ages 6-11 experienced confinement, while nearly 50 percent of adolescents and nearly 60 percent of adults did.  = Age 6+  = Age 12+  = Age 21+

Factors Associated With Reduced Secondary Disabilities
Stable home Early diagnosis No violence against oneself More than 2.8 years in each living situation Recognized disabilities Diagnosis of FAS Good quality home from ages 8 to 12 Basic needs met for at least 13 percent of life Streissguth and colleagues identified factors that could reduce secondary disabilities. Most of these factors can be altered. Only one, a diagnosis of FAS, cannot be changed. FAS can be treated but it cannot be cured. It is a lifelong disability. However, the diagnosis of FAS can improve outcomes because recognition of the disability helps in providing appropriate interventions. Stable home: A stable, nurturing home for more than 72 percent of the person’s life makes a difference. In addition, it helps to have a consistent living situation for an average of more than 2.8 years in each place and a good quality home from ages 8 to 12. Other related factors are having basic needs met for at least 13 percent of life and having alcohol or drug abusers as part of one’s living situation for less than 30 percent of life. No violence against oneself: Although this is a protective factor for secondary disabilities, especially sexually inappropriate behavior, 72 percent of those in the study had experienced some violence (physical, sexual, or domestic) against themselves. Recognized disabilities: Individuals identified as eligible for Department of Developmental Disabilities services in Washington State had reduced levels of secondary disabilities. This is most likely because these individuals were recognized as having a disability and received services. Diagnosis of FAS: Early and accurate diagnosis is essential. In the study, persons with FAS had better outcomes than persons with FAE. The early and specific diagnosis most likely helped individuals obtain needed services. In addition, it is easier to be recognized as having a disability when FAS facial features are present. Streissguth, et al. (1996)

Diagnosis This section includes: Diagnosing Fetal Alcohol Syndrome
Differential Diagnosis of Features of FAS FASD and Mental Health Risks of Not Identifying and Appropriately Treating FASD Benefits of Identification Although FASD is not a diagnosis, some disorders can be diagnosed, such as FAS. No diagnostic criteria have been agreed on for the various disorders under the FASD umbrella, but CDC recently released guidelines for FAS diagnosis and referral. (These are discussed on the next slide.) FASD includes multiple conditions, such as alcohol-related neurodevelopmental disorder and alcohol-related birth defects.

Diagnosing Fetal Alcohol Syndrome
Prenatal maternal alcohol use Growth deficiency Central nervous system abnormalities Dysmorphic features Short palpebral fissures Indistinct philtrum Thin upper lip In July 2004, CDC published Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis ( This was a significant effort by a scientific working group from across the United States. The four areas identified in the guidelines as necessary for a diagnosis of FAS have been used for a number of years. Prenatal maternal alcohol use: The guidelines call for either confirmed or unknown prenatal alcohol exposure. Growth deficiency: “Confirmed prenatal or postnatal height or weight, or both, at or below the 10th percentile, documented at any one point in time (adjusted for age, sex, gestational age, and race or ethnicity).” Central nervous system (CNS) abnormalities: The guidelines identify three components of CNS abnormalities: structural, neurologic, and functional deficits. Structural deficits are identified as head circumference at or below the 10th percentile adjusted for age and sex or clinically significant brain abnormalities observable through imaging. Neurologic deficits are identified as neurologic problems not due to postnatal insult or fever, or other soft neurologic signs outside normal limits. Functional deficits include “global cognitive or intellectual deficits (e.g., decreased IQ) representing multiple domains of deficit (or significant developmental delay in younger children) with performance below the 3rd percentile (2 standard deviations below the mean for standardized testing) or functional deficits below the 16th percentile (1 standard deviation below the mean for standardized testing) in at least three of the following domains: cognitive or developmental deficits or discrepancies; executive functioning deficits; motor functioning delays; problems with attention or hyperactivity; social skills; other, such as sensory problems, pragmatic language problems, memory deficits, etc.” Dysmorphic features: The diagnostic guide states that all three features must be present. A number of other syndromes have some of these features, but very few have all three. The scientific working group adopted the three features identified in the University of Washington’s original diagnostic guide written by Sterling Clarren and Susan Astley in They developed a lip-philtrum guide that the scientific working group adopted. Individuals with FAS score 4 or 5 on the lip-philtrum guide (available from the University of Washington FAS Diagnostic and Prevention Network, Source: Astley, S.J Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code, Third Edition. Seattle: University of Washington Publication Services, p. 114. Caucasian African American

Differential Diagnosis of Features of FAS
Differential diagnosis is very important because: Many syndromes can cause features that look like FAS. Facial features alone cannot be used to diagnose FAS. Differential diagnosis is the determination of which one of two or more diseases or conditions a patient has by systematically comparing and contrasting the results of diagnostic measures. The goal of CDC’s diagnostic guidelines was to provide standard diagnostic criteria for FAS so that consistency in diagnosis could be established for clinicians, scientists, and service providers. Differential diagnosis from other genetic, teratologic, and behavioral disorders was emphasized. For more information, see the guidelines at In a number of syndromes and disorders, individuals display one or more of the facial features of FAS. Since no single dysmorphic feature is unique to FAS, the combination of all three facial features is essential in accurately diagnosing FAS. In a number of syndromes, individuals display other facial features that are sometimes seen in FAS. However, differentiating features between FAS and these syndromes must be examined in making an accurate diagnosis. Differential diagnosis of growth problems: Growth problems may be related to poor nutrition, genetic disorders, or maternal smoking. Environmental and genetic bases for growth retardation should be considered when contemplating an FAS diagnosis. Differential diagnosis of CNS abnormalities: Differential diagnosis includes both ruling out other disorders and specifying co-occurring disorders. CNS abnormalities may be related to organic syndromes or problematic home environments. A complete and detailed family history is needed to confirm a diagnosis of FAS or environmental causes of CNS abnormalities.

FASD and Mental Health Prenatal alcohol exposure may lead to severe behavioral, cognitive, and psychiatric problems but is not a psychiatric disorder. An FASD may co-occur with mental illness or substance use disorders. Fetal alcohol spectrum disorders are not identified as specific diagnoses in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). This manual is used by mental health clinicians to diagnose mental illnesses. Although no diagnoses associated with prenatal alcohol exposure are in the DSM-IV, researchers at the University of Washington identified mental health problems in over 90 percent of individuals involved in a secondary disabilities study published in 1996. Although FAS is not a DSM-IV diagnosis, a medical diagnosis is found in the International Classification of Diseases (ICD). The text for code states: “Alcohol affecting fetus or newborn via placenta or breast milk. Fetal alcohol syndrome; fetus or newborn affected by noxious substance transmitted via placenta or breast milk.” This category is not exclusive to FASD but is the only one that mentions FAS. An FASD may co-occur with mental illness or substance use disorders: The mental illness may be a misdiagnosis or a co-occurring disorder. Because of the possibility of misdiagnosis and co-occurrence, it is essential to conduct a thorough diagnostic evaluation that includes medical, neuropsychological, and adaptive functioning testing; a psychiatric exam; and a family history. Often a person with a fetal alcohol spectrum disorder may have a mental illness or substance use disorder. It is very important to determine exactly what is affecting the person’s functioning. Otherwise, the proposed treatment may not help. Therefore, a thorough diagnostic evaluation is imperative. DSM-IV

Benefits of Identification
Helps decrease anger and frustration for individuals, families, providers, and communities by helping them understand that negative behavior results from the disability and is not willful Helps people with an FASD succeed by focusing on why they have trouble in certain programs Helps improve outcomes Helps prevent future births of children with an FASD Correctly diagnosing a fetal alcohol spectrum disorder has many benefits. It might decrease the frustration and anger in persons with an FASD about not being like others their age. It can also decrease the frustration and anger of caregivers toward the individual when they realize that the individual is not just being willful. Accurately identifying a fetal alcohol spectrum disorder and intervening appropriately can improve outcomes in any setting (e.g., school, vocational services, treatment, corrections). Women at highest risk of giving birth to a child with an FASD are those who have already given birth to a child with an FASD. Therefore, identifying children with prenatal alcohol exposure and providing appropriate support and treatment for their mothers may reduce future births of children affected by prenatal alcohol exposure.

Treatment This section includes: General Issues in FASD
Intervention Issues Systems of Care Serving Persons With an FASD Economic Costs of FAS

General Issues in FASD Often undiagnosed, especially in adolescents, adults, and persons without FAS facial features More difficulties seen in those without FAS facial features and with higher IQs Adaptive functioning more impaired than intelligence Often undiagnosed: Because the facial features of FAS are harder to observe in adolescents and adults than in children, FAS diagnosis often focuses on children. Adolescents and adults are often undiagnosed. In addition, many physicians only diagnose FAS. If they cannot detect the facial features that indicate FAS, they will not investigate further to see if another fetal alcohol spectrum disorder is present. This is why a multidisciplinary team is needed. More difficulties: Those without the facial features of FAS and those with higher IQs frequently have more difficulties than persons with FAS because they do not look or seem disabled. They are viewed as more capable than they may actually be in managing day-to-day life. Teachers and others may see an IQ of 90 or 100 and assume that the person’s unacceptable behavior must be purposeful, since he or she is bright enough to do better. Adaptive functioning: Adaptive functioning is the area most impaired by prenatal alcohol exposure. It is the ability to appropriately use communication skills, socialization skills, and daily living skills. Adaptive functioning tests are often not administered, because they are not part of a routine psychological testing profile. Such tests need to be specifically requested. Adaptive functioning tests may help indicate to service providers where a person’s disabilities lie regardless of IQ. A number of adaptive functioning scales are currently used. None have been examined for sensitivity to the issues of FASD. In her earlier studies, Streissguth used the Vineland Adaptive Behavior Scale. Some think that this scale may not be the best. Preliminary work is taking place in Canada to determine whether available adaptive functioning tests are effective in identifying the specific difficulties in FASD.

Intervention Issues Failure in traditional programs
People with an FASD may know what they need to do but cannot follow through Caregivers with unrecognized FASD often labeled neglectful, uncooperative, or sabotaging treatment because they do not follow instructions Limited FASD-specific services People who “fail” in treatment may have an unrecognized fetal alcohol spectrum disorder. Although they will often say that they know what they need to do, they may not follow through for a number of reasons, such as difficulty following multiple directions, recalling rules, and applying what they have been told to real-life situations. Some caregivers may have fetal alcohol spectrum disorders. They are often seen as neglectful or uncaring or sabotaging the treatment of their child or other loved one when, in fact, they have difficulty following multiple instructions. For example, a parent may receive a list of instructions to “Call this number to schedule a physical, call this number for a mental health assessment, go to the welfare office to apply for food stamps, and call here in 2 weeks to arrange your next appointment.” The parent does not follow through. If he or she is affected by prenatal alcohol exposure, those are too many tasks to complete on his or her own. A major problem in the field is the lack of services geared to the needs of people with an FASD.

Systems of Care Serving Persons With an FASD
Health Education Social and community services Legal and financial services Health: Physicians, clinics, labs, nurses, psychologists, and other medical and dental services. Education: Teachers, speech therapists, physical and occupational therapists, and other services provided through the school system. Social and community services: Child welfare, foster care, substance abuse treatment, parenting education, social work, and other services to support the individual and family. Legal and financial services: Adoption attorneys, judges, Supplemental Security Income, vocational rehabilitation, job coaches, and other services related to income support. Image source - school: Image source - caduceus: Image source - scales of justice:

Systems of Care A person with an FASD may need multiple services involving numerous agencies in various service systems spread across a number of locations. It is rare to find coordination of services or case management for persons with an FASD. Depending on the individual’s specific needs, several dozen providers may be involved. This child’s family was able to access services due to early diagnosis and his mother’s connection with the service network.

Economic Costs of FAS Fetal alcohol syndrome alone cost the United States more than $4 billion in 1998. The average lifetime cost for each child with FAS is $2 million. $1.6 million for medical care services $0.4 million for loss of productivity Increased costs Cost figures are only available for FAS due to the difficulty in diagnosing other disorders and tracking associated costs. Direct costs, which are the actual use of goods and services (e.g., health system, social system, justice system), total $3.9 billion. Indirect costs, which include forgone potential productivity (morbidity, mortality, disability, incarceration/crime career), total $1.5 billion. Differences in cost estimates relate to various factors, including elements used to calculate costs, such as: Medical treatment Residential care for those up to age 21 or those 21 and older All residential care or just care for mental retardation (the case in most studies) Residential care other than for mental retardation Special education Lost productivity Incidence rates used Image source - money: Lupton, Burd, and Harwood (2004)

Increased savings through prevention
Economic Costs of FAS One prevented case of FAS saves: $130,000 in the first years $360,000 in 10 years $587,000 in 15 years More than $1 million in 30 years This information demonstrates that effective prevention can be very cost-effective. Increased savings through prevention Lupton, Burd, and Harwood (2004)

Outcomes This section includes:
Strategies To Improve Outcomes for Persons With an FASD Strengths of Persons With an FASD Paradigm Shift Many secondary disabilities can be lessened or avoided if persons working with an individual understand FASD. They need to modify their approach to support the way the person learns academics and social behavior. Examples of secondary disabilities include mental illness (although some persons with an FASD are born with mental illness), substance abuse problems, academic problems, and trouble with the law.

Strategies To Improve Outcomes for Individuals With an FASD
Educate families and providers about FASD. Ask about possible prenatal alcohol exposure at intake. Ask about substance use during medical appointments. These are some general strategies that might help people with prenatal alcohol exposure. Not all will work in every instance, and most have not been rigidly tested in controlled studies. However, they are based on the experiences of many people living and working with individuals with an FASD and research in the field during the past 30 years. For example, it is important to educate families and providers about FASD so that they can understand why certain people struggle as they do and how to help in prevention and treatment. In addition, it is important to increase routine screening of pregnant women for substance use. Ask about possible prenatal alcohol exposure at intake: When working in a setting in which individuals discuss a family history of substance use, especially alcohol use, it is important to investigate the possibility of prenatal alcohol exposure. Have a thorough diagnostic workup: Because many other conditions have some of the symptoms of various fetal alcohol spectrum disorders, it is essential to have a thorough diagnostic workup to determine the individual’s specific disorders. Have a thorough diagnostic workup. Dubovsky, Drexel University College of Medicine (1999)

Strategies for Sensory Integration Issues Simplify the individual’s environment. Provide a lot of one-to-one physical presence. Take steps to avoid sensory triggers. Strategies can target different symptoms and behaviors. The strategies noted here are grouped by the problems they are designed to address. Sensory Integration Issues Simplify the individual’s environment: Individuals with an FASD do better with simpler, consistent environments. They are likely to become overstimulated by lots of objects. Provide a lot of one-to-one physical presence: A number of people with an FASD do better when they have someone physically with them. This can help them filter out distractions and stay focused. Take steps to avoid sensory triggers: People with an FASD may have problems with certain foods, clothing, sounds, or other types of stimuli. Avoiding stimuli that trigger negative reactions can help, such as removing tags from clothes or staying out of crowded malls.

Strategies for Memory Problems Provide one direction or rule at a time and review rules regularly. Use a lot of repetition. Memory Problems Provide one direction at a time: Individuals with an FASD do much better when given one direction at a time. Once that direction is completed, they can be given the next one. Review rules regularly: It is much more effective to limit the number of rules, review them repeatedly, and role play different situations in which the person will need to recall the rules. Use a lot of repetition: The more repetition is used, the more likely it is that the material will be remembered. The amount of repetition needed is not correlated with IQ. Even those with an FASD who are very bright may need constant repetition.

Strategies for Information Processing Problems Check for understanding. Use literal language. Teach the use of calculators and computers. Look for misinterpretations of words or actions and discuss them when they occur. Tell me what you just heard me say. Information Processing Check for understanding: Asking “Do you understand?” is ineffective. The answer will most likely be “yes” even if the reality is no. It is better to ask persons with an FASD to repeat what they have been told to ensure that the speaker was clear. Use literal language: Similes, metaphors, and idioms can confuse persons with an FASD. They take things literally and do not understand figures of speech. For example, if someone says, “I’m sorry. I got carried away,” they may say, “You weren’t carried away. You’re still here.” Teach the use of calculators and computers: Many individuals with an FASD are very good with computers. Also, having them learn and understand abstract math concepts such as decimals and fractions could be an exercise in frustration for all involved, whereas teaching a person to use a calculator may be helpful as a life skill. Be aware of misinterpretations: Misinterpreting the words, actions, and body language of others is a significant problem for many with an FASD. Therefore, whenever possible, it is important to catch those misinterpretations (e.g., “he was staring at me and hates me”) when they occur. That will give the best opportunity to address these discrepancies between what the person believes is going on and what is actually happening.

Strategies for Executive Function Deficits Use short-term consequences specifically related to the behavior. Establish achievable goals. Provide skills training and use a lot of role playing. Executive Function Deficits Use short-term consequences: Immediate, short-term consequences linked to the action are the best at helping the person connect cause and effect. Establish achievable and short-term goals: Making plans is easier if goals are realistic. Provide skills training: Training in problem-solving skills can be very beneficial. However, running an 8-week program and then thinking that the person “gets it” is most likely not the best approach. They need much repetition. Using a lot of role playing with the individual, as well as addressing many situations, can be very helpful. Constant coaching and teaching step-by-step processes can help as well. Image source - role playing: cals.ufl.edu/Ambassadors/2002RetreatPhotos/pages/role%20playing_JPG.htm

Self-Esteem and Personal Issues Use person-first language (e.g., “child with FAS,” not “FAS kid”). Do not isolate the person. Address issues of loss and grief. Do not blame people for what they cannot do. Set the person up to succeed. Self-Esteem and Personal Issues Use person-first language: A fetal alcohol spectrum disorder may be part of who a person is, but it is not the person’s entire identity. Someone can “have FAS” but nobody “is FAS.” Do not isolate the person: Sending persons with an FASD to their room to think about what they have done will most often only increase a sense of isolation. Address issues of loss and grief: All individuals with an FASD have experienced losses. At the very least, the fact that they are not like their peers is a loss, especially as they reach adolescence. It is important to be attuned to these losses and ensure that they are addressed by a skilled professional if necessary. Do not blame people for what they cannot do: Demanding that people repeatedly try to do things they cannot do is a lesson in frustration. It is important to have patience and understand individual limitations. People with an FASD may need something repeated several times because they have trouble remembering, not because they refuse to pay attention. Set the person up to succeed: Measures of success need to be different for different people. It is important to identify what would be a measure of success for the individual and to ensure that those with an FASD succeed within this context. Training in social skills, anger management skills, and relaxation skills can help. Congratulations

Strengths of Persons With an FASD
Friendly Likable Desire to be liked Helpful Determined Have points of insight Not malicious It is always important to identify strengths in people with whom one works or lives. Otherwise, it is difficult to address a person’s needs adequately. This is a general list of strengths often seen in people with an FASD. It is by no means exhaustive, nor are all these strengths seen in everyone with an FASD. In each individual situation, it is crucial to identify the strengths in the person, family, and service providers. Some of these strengths (e.g., being friendly and helpful) can pose difficulties (e.g., doing whatever someone asks without awareness of possible consequences). Points of insight: Individuals with an FASD are sometimes very perceptive in a certain aspect of their lives, such as their inability to drink alcohol. However, that insight may not carry over to other aspects of their lives. As caregivers, it is important not to generalize that if a person has insight into one area of his or her life (or insight on any given day) then he or she will have insight into other areas of life (or everyday). Not malicious: For the most part, people with an FASD are not malicious and do not act with premeditation. Dubovsky, Drexel University College of Medicine (1999)

Cuddly and cheerful Happy in an accepting and supportive environment Loving, caring, kind, sensitive, loyal, and compassionate Energetic and hard working Fair and cooperative Spontaneous, curious, and involved Strengths vary from individual to individual, and every strength cannot be shown on one or two slides. In addition to strengths, the skills of persons with an FASD may include: Concrete thinking Strong visual memory Ability to learn by doing Enjoyment of repetitive tasks Creative intelligence (artistic and musical) Mechanical skills Interest in gardening and construction Good sense of humor Storytelling and writing Photos courtesy of Teresa Kellerman

Highly verbal Highly moral—deep sense of fairness Kind with younger children and animals Able to participate in problem solving with appropriate support Photo courtesy of Teresa Kellerman

Build on strengths of persons with an FASD, such as giving them opportunities to help in the classroom. Use teaching strategies that focus on strengths. Find jobs that use the person’s strengths. Photo courtesy of Teresa Kellerman Build on strengths of persons with an FASD: It can help increase their self-esteem and ability to function. For example, since people with an FASD often like to help out, finding ways for them to help at school can engage them more. Many people with an FASD are good with younger children, so planning activities in which they partner with younger students is another option. Building on strengths can help the family as well. With appropriate supervision, family members with an FASD can play with younger siblings or cousins while their parents fix dinner or do chores nearby. Use teaching strategies that focus on strengths: For example, if a student is good at drawing, drawing exercises may improve learning. If a student is a visual learner, pictures may help. Find jobs that use the person’s strengths: For example, one young woman with FAS likes animals, so she runs her own cat-sitting business.

Paradigm Shift “We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.” —Dubovsky, 2000 This paradigm shift is very important. Most of the time, service providers use a program that works with many people, as shown by experience or research. If the person does well in the program, the program is viewed as successful. If the person does not do well (by the program’s standards), the person is seen as failing or as unmotivated. Service providers and caregivers need to change this mindset. It is their responsibility to identify methods to ensure that the person succeeds (in the individually developed definition of success for the person).

Resources SAMHSA FASD Center for Excellence: fascenter.samhsa.gov
Centers for Disease Control and Prevention FAS Prevention Team: National Institute on Alcohol Abuse and Alcoholism (NIAAA): National Organization on Fetal Alcohol Syndrome (NOFAS): These sites link to many other Web sites. Further information is available through the FASD Center’s Information Resource Center, STOPFAS ( ) or In addition, users may request training from the FASD Center by contacting the Information Resource Center or completing the the online form at fascenter.samhsa.gov/resource/ta/trainingassistance.cfm.

FETAL ALCOHOL SPECTRUM DISORDERS

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