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, 1-866-STOPFAS (786-7327) or fascenter@samhsa.gov. 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.

DEFINITION OF ALCOHOLISM PRIMARY DISEASE OFTEN PROGRESSIVE AND FATAL IMPAIRED CONTROL PREOCCUPATION ADVERSE CONSEQUENCES DENIAL

ALCOHOL USE IN TEENS 50.9% of Americans aged 12 or older reported being current drinkers of alcohol in a 2006 survey, with youths aged 12 to 17 alcohol use being 16.6% Among youths aged 12 to 17 in 2006 who were heavy drinkers, 56.7% were also current illicit drug users Among youth aged 12 to 17 the percentage of males who were current drinkers(16.3%) was similar to the rate for females(17.0%)

ADOLESCENT PREGNANCY Adolescents are more likely to engage in high risk behaviors, such as unprotected sex, when they are under the influence of alcohol or drugs.

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: www.beerpictures.net/

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) Alcohol-related birth defects (ARBD) Alcohol-related neurodevelopmental disorder (ARND) Partial FAS (pFAS) Pregnancy Alcohol + 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 – http://images.google.com/imgres?imgurl=http://www.hsph.harvard.edu/nutritionsource/images/Wine%2520glasses.JPG&imgrefurl=http://www.hsph.harvard.edu/nutritionsource/alcohol.html&h=399&w=509&sz=25&tbnid=4LoTY2OmbhgJ:&tbnh=100&tbnw=127&start=10&prev=/images%3Fq%3Dwine/%2Balcohol%26hl%3Den%26lr%3D%26sa%3DN Image source - pregnant woman: www.chemicalbodyburden.org/images/pregnant%20woman1.jpg May result in

Reprinted with permission, Streissguth A.P., & Little, R.E. Children with FAS may also be born with many other medical problems including heart and kidney defects, as well as bone, joint, eye , ear and liver dysfunction. Additionally , they are often more susceptible to illnesses such as cold and ear infections (NJ Dept. of Human Services, 2000).

FASD Facts: 100% 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: www.novadic.nl/images/alcohol.jpg

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 Alcohol = = Binge = 3 or more drinks on one occasion Drink = 12 ounces of beer, 5 ounces of wine, or 1 ounce of hard liquor = =

EFFECTS OF ALCOHOL Weeks 1 – 8: Nervous system damage Days 15 – 25: Brain Damage Third week after conception: Highest risk of producing FAS, including facial abnormalities Third month: Rapid growth period During this entire trimester, structural damage can occur

SECOND TRIMESTER (3RD TO 6TH MONTH) Organs vulnerable to functional defects, especially: CNS Eyes Teeth Period of rapid growth occurs in 3rd month and continues until after birth

THIRD TRIMESTER (6TH through 9th month) Rapid growth continues Immune system develops Risk of birth defects and damage to the developing brain

HOW DOES ALCOHOL CAUSE BRAIN DAMAGE Excessive cell death Reduced cell proliferation Migrational errors in brain development Inhibition of nerve growth factor Disruption of neurotransmitters

FAS and the Brain Permission to use photo on file. 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. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.

FAS and the Brain Agenesis is the lack or failure of development of a body part. A 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. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1):49–52.

BEHAVORIAL EFFECTS FOLLOWING PRENATAL ALCOHOL EXPOSURE Hyperactivity, reactivity Attention deficit disorders, distractibility Lack of inhibition Mental retardation, learning difficulties Perseveration

BEHAVIORS, CONTINUED Feeding difficulties Gait abnormalities Poor fine/gross motor skills Developmental delays (motor, social, language) Hearing abnormalities

LIFE LONG EFFECTS Children with FASD face many challenges and frustrations Infants and toddlers have developmental problems and delays. They may have poor muscle tone, be extremely irritable, abnormal sleep/wake cycles, disordered attachment, and feeding difficulties

LIFE LONG EFFECTS In toddlers there may be language delays, head banging, delayed motor skills, hyperactivity, cognitive delays and mental retardation In preschoolers, hyperactivity short attention span, aggressiveness, poor articulation and slow vocabulary development

LIFE LONG EFFECTS Children of school age will have many challenges throughout their school years They may look different and act different than their peers, which effects self esteem and social interactions

LIFE LONG EFFECTS The symptoms often seen are poor memory, attention deficits, learning disabilities, language problems, poor impulse control, increased aggressiveness and poor judgment FASD is often undiagnosed and the child will have continuing difficulties

General Issues With FASD Often undiagnosed among 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 behavioral, cognitive, and psychological 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.

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/FASD FASD cost the United States more than $6 billion in 2004. 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: www.sidereus.org/MONEY/money_dollar_cash-2.htm Lupton, Burd, and Harwood (2004)

IMPORTANT Early evaluation and proper diagnosis will enable interventions that will enhance the quality of life for those effected by prenatal exposure