The information below was developed using applicable AAP Clinical Guidelines, AAP Technical Reports, AAP Policy Statements, and pertinent resource materials and answers frequently asked questions. Click on a question to link to an informative answer.
Fetal Alcohol Spectrum Disorders
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Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term used to describe preventable birth defects and intellectual/neurodevelopmental disabilities that result from prenatal alcohol exposure. The term FASD lacks specificity and is not in itself a clinical diagnosis.
Diagnoses reflecting the various clinical presentations along the fetal alcohol spectrum may include Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE), Alcohol-Related Neurodevelopmental Disorder (ARND), Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (PFAS), and Alcohol-Related Birth Defects (ARBD).
Individuals with an FASD need to be assessed and cared for within a medical home by clinicians with awareness about the effects of prenatal alcohol exposure for diagnosis, care management, screening for co-occurring conditions, and referral/consultation when appropriate, including referrals for multidisciplinary diagnostic evaluations, for appropriate co-occurring conditions and ND-PAE differential diagnoses.
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The exact number of children/individuals who have an FASD is difficult to determine, and numbers may be underestimates due to the difficulty of establishing a history of prenatal alcohol exposure. With the exception of FAS, prenatal alcohol exposure is a prerequisite for diagnosis of an FASD. Studies suggest that FASDs occurs in 1% to 5% of grade school children. Less than 20% of these children will meet criteria for the full FAS diagnosis, which has both neurodevelopmental and physical features.
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Children with prenatal alcohol exposure come from all social, economic, and ethnic groups. Drinking alcohol is a common activity. In the United States, 1 in 9 women report alcohol use during pregnancy in the past 30 days. Among pregnant women, about one third who reported consuming alcohol engaged in binge drinking (having 4 or more drinks at one time).
Although parents with substance use disorder have a higher likelihood of having a child with an FASD, most children with an FASD are born to parents who do not have a substance use disorder. Prenatal alcohol exposure and potential harm can also occur before a woman is aware that she is pregnant. -
While prenatal exposure to alcohol during pregnancy can result in a child having an FASD, substance use disorders (SUD) occur when the recurrent use of alcohol and/or drugs causes clinically significant impairment, including health problems, disability, or failure to meet major responsibilities at work, school or home. Substance use disorders are a treatable chronic condition with periods of recovery and relapse.
Developing a therapeutic relationship with mothers with substance use disorders is critical to providing family support as part of an integrated medical home. Stigmatization (blame) of mothers by pediatricians, nonphysician clinicians and allied health professionals can negatively affect the relationship and result in poorer outcomes for children. Refer those seeking SUD treatment to available resources while maintaining a supportive and non-judgmental relationship.
View additional information available at Substance Abuse and Mental Health Services Administration and National Institute on Alcohol and Alcoholism and the Centers for Disease Control and Prevention.
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Early diagnosis of an FASD through a pediatric medical home can improve developmental outcomes, reduce the risk of secondary or co-occurring conditions, and facilitate family functioning. Individuals with an FASD are at increased risk for learning disabilities, mental illness, addiction, school failure, dropping out of school, and interactions with the criminal justice system.
Identification and appropriate diagnosis of a child with an FASD can support appropriate access to early intervention as well as evidence-based interventions and supports which can favorably impact some common challenges experienced by children with an FASD and their families. Such challenges include learning and memory deficits, executive functioning difficulties, poor academic skills, visual and fine motor impairment, and learning social and communication skills. Ongoing interaction with a knowledgeable, sympathetic and supportive pediatrician can help parents reframe their child’s difficulties as reflecting the child’s brain damage which helps them to provide better care at home and to better navigate the therapeutic process.
Prevention
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A pediatrician can play an important role in the primary prevention of prenatal alcohol exposure. Prenatal education during a prenatal visit can prevent a future alcohol exposed pregnancy and diminish the likelihood of a child having an FASD. Prenatal education can occur during a prenatal visit and during the inter-conception period to prevent future FASDs, when a provider gives advice about the risks of alcohol-exposed pregnancy. Pediatricians can reinforce that there is no amount of alcohol that is known to be safe during pregnancy. Prevention counseling can acknowledge what is known and what is not known about the likelihood of harm.
When a biological child receives an FASD diagnosis, pediatricians may take the opportunity to have a discussion about FASD prevention for any future pregnancies. These discussions can also provide primary prevention as research shows that, when women stop drinking alcohol during the pregnancy, there may be less negative impact than if they continue drinking through the pregnancy. When a foster or adoptive child receives an FASD diagnosis, the medical home and family can not only support the child in receiving services but also provide information to caseworkers to help the child’s birth mother become aware of the impact of prenatal alcohol exposure in any future pregnancies.
As described in the AAP Technical Report Alcohol Use by Youth (Pediatrics July 2019), pediatricians may give clear, consistent advice to adolescent patients about the risks of alcohol, tobacco, and substance use during a future pregnancy.
Additional information is available in the AAP Clinical Reports, The Role of Integrated Care in a Medical Home for Patients With a Fetal Alcohol Spectrum Disorder and Families Affected by Parental Substance Use.
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FASDs are completely preventable. The Surgeon General’s Advisory on Alcohol Use in Pregnancy indicates that women who are pregnant or trying to get pregnant should refrain from alcohol consumption if they want to guarantee their child will not have an FASD (available in English and Spanish).
Pediatricians can reinforce the following essential information about alcohol use during pregnancy:
- Prenatal alcohol exposure causes birth defects and developmental disabilities, collectively known as Fetal Alcohol Spectrum Disorders. Prenatal alcohol exposure can be linked to other outcomes, such as miscarriage, stillbirth, preterm (early) birth, and sudden infant death syndrome (SIDS).
- There is no known safe amount of alcohol use during pregnancy. All types of alcohol can be harmful, including red or white wine, beer, and liquor.
- Alcohol can cause problems for a developing baby throughout pregnancy, including before a woman is aware that she is pregnant.
- FASDs are preventable if a developing baby is not exposed to alcohol before birth.
- If alcohol consumption occurs during pregnancy, stopping further use of alcohol does not eliminate the risk of FASDs but reduces the risk of further brain damage resulting from prenatal alcohol exposure.
View information about Alcohol and Pregnancy and Alcohol Use and Binge Drinking Among Pregnant Women.
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- During pregnancy no amount of alcohol intake should be considered safe.
- There is no safe trimester to drink alcohol and all forms of alcohol, including beer, wine, and liquor, pose similar risk.
- Binge drinking (having 4 or more drinks at one time) poses greater risks to the developing fetus.
- Research confirms that the safest choice is for women to refrain completely from alcohol use while pregnant or trying to get pregnant.
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No amount of alcohol use is known to be safe for a developing fetus at any stage of pregnancy. All drinks containing alcohol have the potential to harm a developing fetus, but not every developing fetus exposed to alcohol will develop a clinically detectable FASD. Harm may occur even before a woman is aware that she is pregnant, which is significant, because nearly half of all pregnancies in the United States are unplanned. Currently, it is not possible to predict which fetuses will be affected by prenatal exposure to alcohol. The safest choice is for women to completely refrain from alcohol consumption while pregnant or trying to get pregnant if they want to reliably prevent their child from having an FASD.
Screening Assessment and Diagnosis
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Children who are exposed to alcohol prenatally may present with neurocognitive deficits (e.g., learning, memory, executive functioning, academics), problems with self-regulation (e.g., difficulty self-soothing, managing mood, and poor impulse control), and delayed adaptive skills (including social/communication abilities). Tables detailing the clinical features of Neurobehavioral Disorders Associated with Prenatal Alcohol Exposure (ND-PAE) across development and age-specific traits can be found in the report Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure (Hagan JF et al Pediatrics, 2016). Because FASDs may present with a range of different findings and co-occurring conditions, reference to Differential Diagnosis for ND-PAE may be helpful to create a custom care management plan that involves multiple types of treatments to meet an individual’s needs.
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The signs and symptoms of an FASD appear in various combinations within a spectrum of presentations. The number of FASD-related features vary among individuals and the severity of features can be from mild to severe. One or more diagnostic schema can be used to identify an FASD(s), dependent upon the presentations.
Neurocognitive deficits, problems with self-regulation, and delayed adaptive skills can present in both Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) and Alcohol-Related Neurodevelopmental Disorder (ARND). ND-PAE and ARND are overlapping and similar but with a major difference. ND-PAE can be present with or without cardinal dysmorphic facial features whereas ARND is without the presence of full cardinal dysmorphic facial features found in individuals with FAS.
There are four assessment domains when assessing an individual for a potential FASD:
- A history of prenatal alcohol exposure – important points:
- No amount of alcohol intake is considered safe during pregnancy.
- There is no safe trimester to drink alcohol.
- All forms of alcohol, including beer, wine, and liquor, pose similar risk.
- Binge drinking (having 4 or more drinks at one time) poses an increased, dose-related risk to the developing fetus.
- Developmental, cognitive, or behavioral concerns: prenatal alcohol exposure may cause deficits in neurocognition, self-regulation and adaptive function (ND-PAE) that can occur at any time during development.
- Neurocognitive deficits include cognitive/developmental deficits or discrepancies, executive functioning deficits, speech/language delays, and/or motor functioning delays.
- Self-regulation problems in younger children can include problems with self-soothing and sleep. Problems in older children can or may include behavior dysregulation.
- Delayed adaptive skills include problems with social skills and self-care or daily living skills.
- Dysmorphic cardinal facial features that may be associated with prenatal alcohol exposure: These features are required for a diagnosis of Fetal Alcohol Syndrome:
- Smooth philtrum (the ridge under the nose and above the lip)
- A thin upper lip (referred to as a thin vermillion border)
- Reduced palpebral fissure length (the distance from the inner corner to the outer corner of the eye)
- Growth deficits and structural anomalies: Severity can vary widely across affected individuals, but findings may include:
- 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, gender, gestational age, race, or ethnicity).
- Reduced brain growth and Microcephaly (head circumference less than 10th percentile) as well as brain malformations
- Heart defects and cleft palate (less common) can be found in a range of FASDs, not just in FAS.
- A history of prenatal alcohol exposure – important points:
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A history of prenatal alcohol exposure is important for identification and diagnosis of an FASD. A diagnosis of an FASD can decrease unnecessary testing, referrals, and interventions resulting from misdiagnoses. People living with an FASD experience improved medical, psychological, and vocational outcomes through longitudinal and targeted intervention and treatment that maximize protective factors and build capacity in identified strengths. An FASD assessment and diagnosis also can help parents and teachers reframe challenging behaviors that are a result of prenatal brain damage rather than willful disobedience. Anticipatory guidance and brief intervention provided by pediatricians can reduce the incidence of future alcohol-exposed pregnancies.
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Developmental screening and routine history taking as part of a health supervision visit are the standard of care followed by referral for additional assessment if the child demonstrates cognitive, developmental, behavioral, and/or global deficits. Most neurobehavioral assessments will require assessment by a psychologist with sufficient experience, or a neuropsychologist.
Screening for prenatal alcohol exposure can be incorporated into a pediatrician’s routine health maintenance questions if screening has not been completed previously. History questions about prenatal alcohol exposure may be included in standard questions about the pregnancy, tobacco use in the home, nutrition, and other aspects of the home environment. When normalized to all patients, “universal screening” questions about drinking convey less stigma. The AAP Screening for Prenatal Alcohol Exposure: An Implementation Guide offers scripts and a supportive methodology to elicit important prenatal history.
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The list of co-occurring conditions and lifelong problems resulting from prenatal alcohol exposure is extensive. Significant neurodevelopmental and neurobehavioral issues ensue directly from the effects of alcohol on the brain, as well as from struggles that neurodevelopmental deficits of an FASD, including impaired neurocognitive functioning, impaired self-regulation, and impaired adaptive functioning produce as the individual tries to navigate home, school, and community environments. Failure to achieve age-appropriate socialization and communication skills results in maladaptive and impaired social functioning.
Individuals with an FASD have a 95% lifetime likelihood of experiencing mental health issues. Among the most prevalent are ADHD, anxiety, depression, conduct disorder/oppositional defiant disorders, substance use disorder, and suicide.
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Many children with an FASD also have ADHD and may benefit from associated treatment. However, children with an FASD may also have attention deficits caused by prenatal alcohol exposure, rather than ADHD. Asking about prenatal alcohol exposure should be part of a comprehensive diagnostic process for any child with attention deficits. Attention deficits in children with an FASD without ADHD may derive from deficiencies in executive functioning skills, short-term memory, information encoding, the ability to shift attention flexibly, and arousal dysfunction, with slower gating of incoming stimulation and reduced capacity to inhibit attending to distracting stimuli, and difficulty quickly processing complex information.
Children with attention problems that are associated with ND-PAE have difficulty in shifting attention and encoding information they are attending to whereas children with attention problems not associated with ND-PAE have difficulty in establishing and maintaining attentions.
If a child presents with behavioral issues, the pediatrician can use in-office tools (i.e., Conner’s and Vanderbilt’s) for behavioral assessment of attention deficits. Neuropsychological testing may help determine if attention issues in a child derive solely from an FASD or from an FASD with co-occurring ADHD. For example, individuals with an FASD without ADHD may perform worse on visual than on auditory sustained attention tasks. If there is evidence of prenatal alcohol exposure and behavioral issues, refer the individual for neuropsychological testing to evaluate for an FASD co-occurring with ADHD.
Pediatric Medical Home
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Developmental screening and routine history taking as part of a health supervision visit are the standard of care. If behavioral issues are identified and there is evidence of prenatal alcohol exposure, then additional assessment is needed for early identification and diagnosis of an FASD. If screening suggests developmental, cognitive, behavioral, or other deficits, conduct behavioral assessments within the medical home. Some neurobehavioral assessments may require assessment by a school psychologist with sufficient experience to assess for a child’s strengths and weaknesses, or a neuropsychologist working with children with FASDs may be required.
Questions about prenatal alcohol exposure should be included in standard questions about the pregnancy, tobacco use in the home, nutrition, and other aspects of the home environment. When normalized to all patients, “universal screening” questions about drinking decrease stigmatization. The AAP Screening for Prenatal Alcohol Exposure: An Implementation Guide scripts offers non-shaming methods to elicit important prenatal history. Obtaining a history of prenatal alcohol exposure should be incorporated into a pediatrician’s routine health maintenance questions if screening has not been completed previously.
The FASD Regional Education and Awareness Liaisons (REAL) champions are experts in the identification of and care for children with an FASD and are available to provide support to pediatricians in their AAP District. Learn more about the FASD REAL Champions Network.
A list of local diagnostic resources is available through the National Organization on Fetal Alcohol Syndrome (NOFAS).
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Pediatricians in a family-centered medical home are well positioned to be advocates and partners with families to ensure appropriate services such as early intervention, special education, and disability services. Pediatricians develop trusted relationships with families which is important for children with an FASD. In a family-centered medical home, pediatricians and nonphysician clinicians can establish an effective, strength-based approach to care, using positive language and focus on family strengths and resilience. Community-based pediatricians play a critical role in integrating the services of a network of specialists, therapists, mental/behavioral health professionals, and educational resources that can contribute to the success of an individual’s care treatment plan and the developmental progress of individuals with an FASD.
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Currently, there are no medications specifically indicated or approved for the treatment of FASDs, but several classes of medications are commonly prescribed to help manage FASD symptoms and behaviors. It is important for the pediatrician managing a child with an FASD to document all medications the child is currently taking and has taken in the past, noting the target symptoms of each medication, the child’s response, and any adverse effects experienced from the medication. In all cases, it is recommended that behavioral interventions be implemented before or with pharmacologic interventions.
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Yes. The brain injury caused by fetal exposure to alcohol has no cure as the damage to the developing brain in utero cannot be reversed. However, there are treatment options that, when implemented early and with awareness of the impact of an FASD, can improve functional outcomes. Each person with an FASD is unique and interventions and management must be tailored for each individual’s strengths and weaknesses.
Treatment options for individuals with an FASD are aimed at improving the symptoms by providing environmental modifications, such as teaching parenting strategies, helping families interact positively with schools, and recommending evidence-based interventions to improve psychological, physical, and vocational outcomes. Effective management focuses on addressing current problems related to an FASD, effectively treating co-occurring conditions, anticipating future challenges, and assisting with transitions through lifelong case management. Effective strategies may change as an individual develops. A trusting partnership between families and clinical teams can help navigate those changes.
Treatment plans integrate the pediatrician and nonphysician clinical staff from the medical home, parents and family members, educational institutions, pediatric subspecialists, and allied health professionals. Pediatricians are encouraged to seek evidence-based interventions for children with an FASD. Additional information is available through the Centers for Disease Control and Prevention.
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The National Organization on Fetal Alcohol Syndrome offers a state-by-state directory to locate FASD diagnostic specialists, support groups, and other resources. The site also provides information about child-specific interventions that target an individual’s profile of strengths and weaknesses, family support, and medication support. Access to available services can begin through a state’s Early Intervention program, a child’s special education program, state developmental disabilities services, and allied health therapy professionals.
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The American Academy of Pediatrics provides coding fact sheets to assist pediatricians in determining accurate coding for visits related to management of an FASD. View coding fact sheets for Fetal Alcohol Syndrome, Developmental Screening/Testing and Emotional Behavioral Assessment and Care Management Services.
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Pediatricians can gather information about a child’s background, including biological family history, details about pregnancy and delivery, and the child’s early history, if this information is available in adoptive/foster care records. Foster or adoptive parents should be encouraged to ask their caseworker for the information.
Assumptions of prenatal alcohol exposure can be detrimental to the psychosocial health of the family and the child’s current or potential relationship with the birth parent. Accurate evidence of prenatal alcohol exposure should be sought. It is important to acknowledge the distress that families experience when a cause cannot be determined, while avoiding an unfounded diagnosis.
It is also important to acknowledge the feelings that parents may experience associated with learning that their child may have an FASD diagnosis. When supporting families, it is essential to focus on treatment moving forward and future prevention, and away from blame or stigma toward the child’s birth parent.
Additional information is available from the AAP Council on Foster Care, Adoption and Kinship Care.
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It is important to take a positive and nonjudgmental attitude in all interactions with the child’s biological family. A supportive, nonjudgmental approach is particularly important when talking to a child’s mother who may experience a host of challenging emotions during a conversation about her child’s prenatal alcohol exposure. It is essential to build and maintain a rapport with the parents, allowing them to express emotions and concerns related to their child’s health and the demands of parenting a child with an FASD. Pediatricians are well versed in the importance of effective communication and advocacy as the child’s care is coordinated through the medical home. Recognize a mother’s parenting strengths and the importance of her bond with her child. This can provide powerful motivation to engage her in recovery and support her in abstinence.
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Generally, moderate alcohol consumption by a breastfeeding mother (up to 1 standard drink per day) is not known to be harmful to an infant, especially if the mother waits at least 2 hours after a single drink before nursing. However, exposure to alcohol above moderate levels through breast milk could be damaging to an infant’s development, growth, and sleep patterns. It is important to explain to a mother that her child’s brain continues to develop in important ways after birth. Alcohol consumption above moderate levels may impair a mother’s judgment and ability to safely care for her child. The safest option for breastfeeding mothers is to not drink alcohol. Review AAP policy on Breastfeeding.
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FASDs are brain-based disorders that include three domains of impairment: neurocognitive deficits, problems with self-regulation, and delayed/poor adaptive skills. Adolescents who display traits of novelty seeking and poor impulse control, like those displayed by many youths with an FASD, are at greater risk of developing substance use disorders.
As described in the AAP Policy Alcohol Use by Youth, substance use by adolescents has an enormous impact on their health, safety, and well-being. Early onset of drinking and heavy drinking in adolescence increases the risk of problematic drinking in adulthood; reasons for this vulnerability include genetic and neurobiological factors. A youth’s environment, particularly parental and peer modeling, can affect his or her alcohol use. Reports indicate that adolescents drink more when they are exposed to parents who appear tolerant of underage drinking. However, environment can play a protective role for youth; for example, clear parental disapproval of underage alcohol consumption and a teenager’s close alliance to parents and family can be protective factors against adolescent alcohol use.
Underage drinking (under age 21) is associated with an increased risk of depression, anxiety, sleep disturbance, self-injuries, suicidal behavior, and greater involvement in other risky behaviors such as high-risk sexual behavior and criminal behavior. Use of alcohol during adolescence can have a negative impact on school attendance and performance.
It is important to know that substance use disorder (SUD) is very often a disease that starts in adolescence, and that prevention efforts and treatment approaches for SUD are generally as successful as those for other chronic diseases. SUD that starts in adolescence is common, preventable, and treatable. Pediatricians can play an important role in reducing the morbidity and mortality associated with adolescent alcohol use. Anticipatory guidance with regard to alcohol use is recommended as a routine part of care for youth and their families, as outlined in the AAP’s Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents.
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FASDs are caused by prenatal alcohol exposure. There are no known genetic factors predictive of the type of FASD an individual may develop due to prenatal exposure to alcohol. A woman with an FASD does not have a risk of having a child with an FASD unless there is exposure to alcohol use during a pregnancy.
Research on FASDs continues and, as information becomes available, the AAP will update its members.
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Last Updated
11/29/2021
Source
American Academy of Pediatrics