Fetal alcohol spectrum disorder: Management and prognosis

INTRODUCTION — Prenatal exposure to alcohol is a leading preventable cause of congenital anomalies and developmental disabilities. Fetal alcohol spectrum disorder (FASD) is a term that is used to describe the range of physical, behavioral, and neurodevelopmental effects that can occur in an individual who was prenatally exposed to alcohol and may have lifelong implications and high societal costs [1,2].

This topic will provide an overview of the management of FASD. The clinical features and diagnosis of FASD and alcohol use in pregnancy are discussed separately. (See "Fetal alcohol spectrum disorder: Clinical features and diagnosis" and "Alcohol intake and pregnancy".)

TERMINOLOGY — FASD is an umbrella term that encompasses the range of physical, mental health, behavioral, and cognitive effects that can occur in individuals with prenatal alcohol exposure [3,4]. In most diagnostic schema, FASD is not a diagnostic term but describes a group of specific conditions, including (table 1) [5,6]:

●Fetal alcohol syndrome

●Partial fetal alcohol syndrome

●Alcohol-related neurodevelopmental disorder (ARND)

●Neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE, sometimes called neurodevelopmental disorder associated with prenatal alcohol exposure)

●Alcohol-related birth defects (ARBD)

The terminology for FASD continues to evolve to reflect the spectrum of clinical presentations. (See "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Terminology'.)

ROLE OF THE PRIMARY CARE PROVIDER — The major roles of the pediatric primary care provider in caring for children with FASD include screening mothers for prenatal alcohol use, early identification, and provision of education and anticipatory guidance, family support, and a medical home [7-9]. (See "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Prenatal alcohol exposure'.)

Early identification — Early identification is associated with improved outcomes and can prevent FASDs in subsequent pregnancies, and may alleviate some areas of concern for parents of children with FASD [10]. (See 'Prognosis' below and 'Prevention' below.)

Identification of FASD is discussed separately. (See "Fetal alcohol spectrum disorder: Clinical features and diagnosis".)

Education and anticipatory guidance — The pediatric primary care provider plays an important role in educating family members about how children with FASD are different from typically developing children and providing strategies to help them shape their child's behavior and development.

Important aspects of education and anticipatory guidance include:

●Helping parents and caregivers understand the neurobehavioral difficulties associated with FASD (eg, short-term memory, visual-spatial abilities, abstract thought); it is important for them to understand that the child's neurobehavioral symptoms are not the result of willful misbehavior (see "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Central nervous system involvement' and 'Resources' below)

●Helping parents and caregivers to develop appropriate expectations (eg, they may need to consider the child to be functioning below their chronologic age when providing instructions) [11]

●Helping parents and caregivers to understand that a stable and nurturing home environment can protect against some of the long-term problems that have been associated with FASD (eg, school suspension, difficulty with the law) [4,12]

In retrospective studies of children and adolescents with FASD, fewer numbers of living placements and placement in family homes (biological or adoptive) were associated with fewer adverse experiences (eg, sexual abuse, physical abuse, exposure to household substance use) than greater numbers of living placements and placement in foster or group care [13,14].

●Providing guidance about behavior management techniques that are helpful in children with FASD (see 'General recommendations' below)

●Preparing parents and caregivers for age-related changes in behavior and risks (eg, risk of peer exploitation or inappropriate sexual behavior during adolescence) [15] and helping them to balance the need for close supervision with the child's desire for independence (see "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Associated problems')

Practice guidelines based on expert clinical judgment and supported by evidence-based research have outlined specific recommendations regarding anticipatory guidance for the management of children with an FASD, as well as key practice points [9,16]. To help guide primary care providers in establishing a medical home where they can comprehensively care for children with FASD and their families, the American Academy of Pediatrics (AAP) developed an FASD toolkit and a clinical report describing integrated care within the medical home for patients with FASD [9,17]. The Fetal Alcohol Spectrum Disorders Competency-Based Curriculum Development Guide for Medical and Allied Health Education and Practice was also developed by the FASD Regional Training Centers, the Centers for Disease Control and Prevention, and the National Organization on Fetal Alcohol Syndrome to enhance primary care providers' knowledge and confidence to care for children with FASDs [18]. In addition, FASD Australia provides information about managing FASD and e-learning modules for health professionals involved in FASD diagnosis and intervention [19].

Family support — The primary care provider plays a critical role in supporting the family during the diagnosis and management of FASD. In a survey, caregivers of children with FASD reported multiple unmet needs, including coordinated care and long-term education and occupation [20].

Primary care providers can support families and caregivers by [3,9]:

●Reducing stigma and shame for parents whose children may be diagnosed with FASD (eg, by acknowledging their concern for the child's well-being and their importance as a member of the care team); the AAP toolkit for FASD provides sample scripts to facilitate communication with the family about FASD [21]

In a cross-sectional survey, having a child with FAS was more strongly associated with depression and other mental health disorders than having a child with other developmental disorders [22].

●Acknowledging the challenges of parenting a child with FASD and encouraging parents and caregivers to pay attention to their own needs; helping families to access respite care may reduce family stress and improve family function [23,24] (see "Children and youth with special health care needs", section on 'Respite care')

●Providing resources (eg, caregiver management training and counseling, caregiver support groups, a toolkit for caregivers developed by the Australian National Organization for Fetal Alcohol Spectrum Disorders [25]) (see 'Resources' below)

●Assessing family members for substance use and addiction and helping them obtain treatment (see "Screening for unhealthy use of alcohol and other drugs in primary care")

●Determining the risk for child abuse, neglect, and violence in the family and providing referrals as indicated (see "Child abuse: Epidemiology, mechanisms, and types of abusive head trauma in infants and children" and "Physical child abuse: Diagnostic evaluation and management" and "Physical child abuse: Recognition" and "Child neglect: Evaluation and management")

●Helping parents and caregivers to identify available intervention services (eg, through the school or community), providing information about the special education laws that may pertain to children with FASD, and helping families navigate the individualized education program process (see "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities')

●Working with parents and caregivers to ensure access to appropriate services, including vocational training and skills of daily living (eg, personal hygiene, money management) [3]

Medical home — Children with FASD have special health care needs, and it is particularly important that they have a medical home with increased emphasis on screening for and early identification of behavioral, mental health, physical health, and oral health problems [9,26-29]. (See "Children and youth with special health care needs", section on 'Framework of care'.)

Within the medical home, roles of the primary care provider may include [9,16,30]:

●Provision or identification of appropriate case management and care coordination, facilitating communication between collaborating providers (see "Children and youth with special health care needs", section on 'Care coordination')

●Linking families with community services (see 'Resources' below)

●Monitoring growth, nutrition, and medical conditions associated with FASD (eg, poor dental health [29], vision and hearing impairment, congenital heart disease, cardiac arrhythmia) [16]

In an international online survey completed by 197 caregivers of 3- to 25-year-old individuals with FASD, more than 80 percent reported that their children had at least one physical health problem [28]. Reported problems other than structural congenital anomalies that were more prevalent among children with FASD than in the general population included digestion/bowel problems (40 percent), joint pain (38 percent), asthma (35 percent), urinary incontinence (32 percent), and eczema/dermatitis (23 percent). Factors associated with increased numbers of physical health problems included older age at FASD diagnosis, comorbid behavioral or mental health conditions, and having a working caregiver. The prevalence of structural congenital anomalies is discussed separately. (See "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Structural congenital anomalies and other abnormalities'.)

●Identification of coexisting mental health conditions that can affect treatment, functioning, and prognosis (eg, attention deficit hyperactivity disorder, substance use)

●Ensuring that children with FASD are receiving appropriate educational and mental health services so they can achieve their highest level of functioning and community participation

●Assessing children for problems with disordered regulation, such as sleep problems (see "Assessment of sleep disorders in children")

●Maintaining a current, accurate problem list

●Planning for transitions as the child gets older (eg, vocational skills, job training)

●Referral to family support programs and requirements for reporting infants affected by prenatal substance exposure are discussed below (see 'Legal requirements and family support' below)

APPROACH TO MANAGEMENT

Individualized care — Given the heterogeneity of physical health, including growth and congenital anomalies, as well as central nervous system effects of prenatal alcohol exposure (table 1), the interventions must be individualized according the strengths and needs of the patient and their family throughout the patient's life [2,4,9,31,32]. Most individuals with FASD benefit from multiple types of intervention (eg, occupational therapy, speech and language therapy, behavior therapy, etc); the necessary interventions may change over time depending upon the number, type, and severity of FASD-associated problems [30,33].

Longitudinal studies suggest that patients with FASDs benefit from early diagnosis and aggressive intervention with physical, occupational, speech and language, and educational therapies [12]. Early intervention may ameliorate some of the central nervous system effects of prenatal alcohol exposure (eg, on language and emotional dysregulation) and prevent associated problems (eg, academic, legal, psychiatric problems).

There are a small, but growing, number of studies evaluating interventions specifically for children with FASD [34-36]. In addition, there is indirect evidence of benefit for some interventions (eg, caregiver training, social skills training) from studies in other neurodevelopmental problems (eg, autism spectrum disorder, learning disability, attention deficit hyperactivity disorder [ADHD]) [3]. (See "Attention deficit hyperactivity disorder in children and adolescents: Overview of treatment and prognosis", section on 'Psychosocial interventions' and "Specific learning disorders in children: Educational management".)

In a review of interventions developed specifically for FASD, factors associated with success included [34]:

●Caregiver education or training

●Explicitly teaching children skills that typically developing children may learn through observation or abstraction (see "Specific learning disorders in children: Educational management", section on 'Explicit or direct instruction')

●Integration of individualized interventions into existing systems of treatment (eg, local early intervention services, school-based special education services) and focusing on family-centered care [37]

General recommendations — Despite the heterogeneity of central nervous system effects in patients with FASD, some general tips for behavior management and promotion of social and cognitive skills in children with FASD can be made to all families raising children with FASD [3,12,38,39].

●Secure attachment and positive relationships can be promoted by:

•Providing "special time" with the child every day (consistent, undistracted quality time)

•Assuring the child that this home is safe and permanent

●Problem behaviors may be reduced by:

•Increasing the predictability and structure of the home and school environment [40]

•Using visual prompts and sequences to simplify instructions, including checklists, and reinforce and remind children how to perform activities of daily living, given the potential difficulties with memory in children with FASD [40,41]

•Developing behavior plans built on positive reinforcement and healthy discipline strategies, recognizing that children with FASD may not respond to traditional behavior therapy techniques because of impaired cause-and-effect reasoning or inability to generalize learning from one situation to another [9,42]

•Simplifying the environment (eg, avoiding multistep commands, reducing distractions, increased adult supervision, and provide a buddy for helping the child in class) [40]

●Families can work to enhance development and cognitive functioning by:

•Increasing functional language skills in daily activities (eg, through reading, telling stories, and pretend play)

•Promoting self-care activities and adaptive skills (eg, reinforcing attempts and successes of desired behaviors, limiting the number of choices and decisions, modeling desired behaviors) [43]

•Enhancing basic mathematic skills (eg, teaching about volume, weight, and length through play, monetary values when shopping)

•Developing social skills through play dates and the use of social stories

•Reinforcing appropriate social boundaries (eg, reading social cues, rehearsing social scenarios)

•Developing executive functioning skills (eg, using visual schedules, highlighting or color coding academic lessons, labeling tasks or homework for the child, sequencing steps in a task, developing checklists)

Targeted interventions — Interventions for FASD focus on enhancing neurocognitive and neurobehavioral skills. The interventions should be individualized according to the strengths and needs of the patient and family [4,9,31]. Targeted areas may include academic skills, executive function/self-regulation skills, social skills, adaptive skills, and caregiver training.

Targeted interventions developed for children with an FASD and their families typically focus on improving skills and decreasing behavioral problems in early and middle childhood. There is growing evidence of the short-term benefits of targeted interventions (described in the sections below) [44]. It is unclear whether the benefits persist because few studies have followed patients into adolescence or adulthood. Moreover, although many interventions were evaluated in randomized controlled trials, most of the trials included few patients [45].

Academic skills — Many of the central nervous system effects of FASD manifest with academic impairments, particularly in mathematics [3,31,46-48]. Remediation of learning difficulties through interventions and accommodations (eg, presenting information in smaller units) may help to prevent frustration and secondary problems (eg, internalizing or externalizing symptoms, school failure) [49].

Although there are few educational interventions developed specifically for children with FASD, clinicians and educators can generalize from evidence-based interventions for other disorders (eg, specific learning disabilities). (See "Specific learning disorders in children: Educational management".)

The Math Interactive Learning Experience (MILE) program is an example of a program to address academic skills that has been modified for use in children with FASD in community settings [50]. In randomized trials, children with FASD assigned to the MILE program demonstrated gains in math knowledge and skills (sustained for six months), improved behavioral regulation, and caregiver satisfaction [51-53].

It is important for school staff to be trained in appropriate techniques for instructing students with FASD [3]. Detailed discussion of these techniques is beyond the scope of this review; educational resources are available through the Substance Abuse and Mental Health Services Administration (eg, Reach to Teach: Educating Elementary and Middle School Children with FASDs).

Executive function/self-regulation — Executive function refers to higher-order and goal-oriented skills such as memory, abstract reasoning, mental flexibility, planning, and automatic self-monitoring. Programs that address executive function and self-regulation skills in children with FASD that have been evaluated in clinical trials include:

●Neurocognitive habilitation – Neurocognitive habilitation is a group intervention aimed at improving executive function skills in children with FASD. In a randomized trial in 78 children (6 to 11 years of age) with FASD, those who received 12 weeks of neurocognitive habilitation had greater scores on the Behavior Rating Inventory of Executive Function compared with controls [54].

●Alert Program – The Alert Program is an intervention for improving the children's self-regulation that is based upon the analogy of a car engine that runs at different speeds: too fast, too slow, or just right [55]. This 12-week program uses sensory integration and cognitive behavioral training to improve executive functioning in children with FASD. In a randomized trial comparing immediate and delayed treatment in 25 children (8 to 12 years of age) diagnosed with an FASD, self-regulation therapy improved emotional control and self-inhibition [56]. In a pilot study, it appeared to be feasible and effective in improving self-regulation and executive function in the classroom setting in remote community schools [57]. In subsequent studies, immediate self-regulation therapy was associated with structural and functional magnetic resonance imaging changes in areas of the brain responsible for emotional regulation and inhibitory control [58,59]. The Alert Program appears to be practical in the classroom setting in remote communities.

●GoFAR program – The GoFAR program is a computer game that teaches the children to focus (F) their attention and make a plan to achieve a problem-solving goal, act (A) on the plan, and reflect (R) upon which plans or actions were successful. It is often combined with individual caregiver behavioral regulation training and practicing strategies in daily life. Two objectives are improved self-regulation and ability to sustain attention. In a pilot study of 25 families with 30 children age 5 to 10 years old with an FASD, the GoFAR program improved sustained attention and inhibited impulsive responding [60]. A third objective is described below. (See 'Adaptive skills' below.)

●FAST Club intervention program – The FAST Club intervention program is an athletic program developed for children with FASD implemented in elementary school gyms [61]. This program uses various types of motor activities including games, structured exercises, and skill development guided by a one-on-one adult buddy trainer along with exercise stations designed to promote speed and agility, strength, balance, bilateral coordination, upper limb coordination, and fine motor skills. In a small sample, the FAST Club intervention was associated with improved response inhibition score on a measure of executive functioning [61,62].

Social skills — Social skills programs are designed to teach children the skills to navigate social interactions [63]. Different programs may focus on different skills (eg, conversation, being a good sport, being a good host, handling teasing, avoiding fights, understanding the difference between friends and strangers). Social skills interventions also should target recognition and management of emotions because the emotional understanding of children with an FASD may lag behind that of their typically developing peers [64]. Among children with FASD, social skills may need to be explicitly taught, practiced, and reinforced [49].

Given their difficulties with boundaries of personal space, interpretation of social cues, and impulse control, social skills training for adolescents and young adults with FASD should address inappropriate sexual behavior [3]. In addition, experts suggest that it is probably best to be open and explicit with adolescents and young adults with FASD about contraception, sexually transmitted infections, and sexual harassment [3]. It is important to state this information in clear and simple language, repeat it often, and give examples across different settings to ensure that healthy sexual behaviors are generalized [65].

Programs that address social skills in children with FASD that have been evaluated in clinical trials include:

●Children's Friendship Training intervention – The Children's Friendship Training intervention is a group intervention program for children and parents that was designed to improve peer relations, social skills, and caregiver understanding of FASD-related disabilities [34]. In a randomized trial in 100 children (6 to 12 years of age), children assigned to Children's Friendship Training showed significant improvement in knowledge of social skills and decreased tendency to interpret peers' interactions as hostile, and parents had improved knowledge about FASD compared with delayed-treatment controls [66,67]. Improvements were sustained for at least three months after the intervention. A subsequent randomized trial in a community mental health setting found similar results [68].

●Neurocognitive habilitation – Neurocognitive habilitation is a group intervention aimed at improving self-regulation skills in children with FASD. In a randomized trial in 78 children (6 to 11 years of age) with FASD, those who received 12 weeks of neurocognitive habilitation had greater scores on the Roberts Apperception Test for Children (a measure of social understanding) compared with controls [54].

Adaptive skills — Children and adolescents with FASD often have difficulty with tasks of daily living (eg, personal care, household chores, managing money), even if they have normal intelligence.

Adaptive skills or life skills training may be included with social skills training but may also be addressed explicitly at school or home. Strategies for teaching adaptive skills include scheduling, practicing, and rehearsing [3]. Specific targets can be identified from scores on adaptive behavior scales (eg, the Vineland Adaptive Behavior Scale, Scales of Independent Behavior-Revised, etc).

●GoFAR program – The GoFAR program is a computer game that teaches the child to focus (F) their attention and make a plan to achieve a problem-solving goal, act (A) on the plan, and reflect (R) upon which plans or actions were successful. It is often combined with individual caregiver behavioral regulation training and practicing strategies in daily life. One objective is to improve adaptive functioning. In a pilot study of 25 families with 30 children age 5 to 10 years old with an FASD, the GoFAR program improved in daily living skills [60]. Other objectives are described above. (See 'Executive function/self-regulation' above.)

Caregiver training — A stable and nurturing home environment is associated with improved outcomes in children with FASD [12]. However, the neurobehavioral effects of FASD can make caregiving difficult and stressful [49].

Caregiver training programs for children with FASD that have been evaluated in randomized trials include:

●Parent-child interaction therapy – Parent-child interaction therapy is a "live" caregiver coaching program designed to enhance parenting skills for managing behavior problems (not specifically related to FASD) [36,69]. In a randomized trial of 58 children (3 to 7 years of age) with FASD, both parent-child interaction therapy and caregiver support and management reduced children's behavior problems and improved caregiver distress after 14 weeks of intervention [34].

●Families Moving Forward (FMF) – FMF is a behavioral consultation intervention developed to help families of children between 4 and 12 years of age with an FASD with behavior problems [34]. It is designed to improve caregivers' self-efficacy and ability to meet family needs and reduce the child's problem behaviors. In a randomized trial of 52 children (5 to 11 years of age) with an FASD, Families Moving Forward intervention reduced challenging and disruptive behavior in children and improved parenting self-efficacy compared with community standard controls.

●Families on Track Integrated Preventive Intervention Program (FOT) – FOT is a program for four- to eight-year-old children with FASD that integrates Families Moving Forward with the Promoting Alternative Thinking Strategies preschool/kindergarten curriculum (a group-based classroom intervention to enhance children's self-regulation and emotional recognition and regulation, and to improve peer relationships) [70]. It consists of every other week in-home caregiver consultation combined with weekly small group interventions with typically developing peers for 30 weeks. In a randomized trial in 30 children with FASD, FOT improved emotional control, parental knowledge and advocacy for their children, and parental perception that family needs were met [70]. Although the benefits for children with FASD gradually diminished after the six-month follow-up, the benefits for parents were maintained [71].

●Strongest Families FASD Parenting Program – The Strongest Families FASD Parenting Program is an internet-based intervention for children with an FASD and their families. Parents can work online through a progressive skill-based curriculum that includes interactive exercises, instructional videos, and audio clips. Monthly telephone coaching sessions are scheduled at parents' convenience. A study evaluating the effectiveness of this program in reducing the behavioral problems and parental distress in 200 parents of children with FASD aged 4 to 12 years is ongoing [72]. However, this novel delivery of information about FASDs to families shows promise.

Asymptomatic children with prenatal alcohol exposure — Infants and young children with confirmed prenatal alcohol exposure but no apparent clinical manifestations of FASD should be monitored for growth impairment and symptoms that may emerge during development (eg, delayed developmental milestones, school problems, impairment in adaptive and self-help skills) [31]. (See "Developmental-behavioral surveillance and screening in primary care", section on 'Approach to surveillance'.)

Medications — Psychotropic medications may be used as an adjunct to behavioral/environmental interventions to treat comorbid neuropsychiatric conditions or symptoms of comorbid neuropsychiatric conditions in children with FASD, including:

●ADHD (see "Attention deficit hyperactivity disorder in children and adolescents: Treatment with medications")

●Mood dysregulation and depression (see "Pediatric unipolar depression and pharmacotherapy: Choosing a medication")

●Maladaptive behaviors including aggression

●Anxiety

Children with FASD who are treated with psychotropic medications should be monitored for beneficial response and adverse effects. Whether children with an FASD respond differently than children without FASD to psychotropic medications, particularly stimulants, is not well understood [73]. A 2021 review of eight studies of psychotropic medication use in children with FASDs reported conflicting findings of the effectiveness of medication for treatment of ADHD and other comorbid neuropsychiatric conditions and limited data for other symptom domains [74].

INDICATIONS FOR REFERRAL

Services

●<3 years – Children with FASD who are <3 years may benefit from speech and language, occupational, and physical therapy.

In the United States, children <3 years of age who have FASD may be eligible for services through Part C of the Individuals with Disabilities Education Act (IDEA), which provides early intervention services for children zero to three years of age with suspected or confirmed developmental delay. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Individuals with Disabilities Education Act'.)

●Preschool- and school-age – Preschool- and school-age children with FASD may benefit from physical therapy, speech and language therapy, occupational therapy (adaptive skills training), social skills training, and special education services. Occupational therapy and social skills training may be particularly helpful because of the visual-motor deficits and problems with social interactions.

In the United States children older than three years typically receive services through preschool special education or through the public school system through Part B of IDEA, provided that they meet eligibility criteria (eg, associated intellectual or learning disabilities, behavior disorders, or other health impairments) [3]. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Eligibility for services'.)

●Adolescents and young adults – Adolescents and young adults with FASD may benefit most from adaptive (eg, daily living) and employment skills (eg, job coach) [3]. As they work toward independence, they may need additional support with transportation and housing, and continued assistance managing money, schedules, and unpredictability.

In the United States, adults with FASD may receive state or federal services, as well as Supplemental Security Income (SSI), which can help individuals with an FASD obtain income assistance and medical insurance [75]. However, eligibility generally is based on intelligence and functional limitations in at least three areas of daily living skills [3].

Mental health — Referral to mental health specialist may be warranted for comorbid mental health conditions (eg, depression, anxiety, substance use, complex emotional trauma) or individual or family counseling [3,30].

Legal requirements and family support — In the United States, referral to child protective services (CPS) for children <3 years who are diagnosed with an FASD is required by the Child Abuse Prevention and Treatment Act (CAPTA) so that plans can be made for safe care and treatment for the child, affected caregiver, and other family members [76]. CAPTA does not require clinicians to refer children with prenatal alcohol exposure who have not been diagnosed with an FASD. Because CAPTA mandates referral rather than reporting, individual states and territories have some flexibility in establishing definitions and practices related to reporting child abuse and neglect; some states require reporting of FASD as a form of child abuse or neglect [9].

Clinicians must be aware of the legal requirements for reporting infants affected by prenatal substance exposure (including alcohol). Individual birth institutions should adopt a policy that complies with local laws and avoids discriminatory practices. The Child Welfare Information Gateway provides a list for each state's reporting requirements and available plans of care.

PROGNOSIS — Children with FASD, particularly those who remain undiagnosed and untreated, are at high risk for adverse life outcomes from "secondary disabilities." These include inappropriate sexual behavior, disrupted school experience, trouble with the law and incarceration, homelessness, unemployment, substance use, chronic mental health problems, and premature death (most likely from impulsivity and poor judgment, such as car accidents or human immunodeficiency virus (HIV) infection, or from comorbidities such as substance use, unhealthy lifestyle, suicide, or homicide) [12,77,78].

Biologic family members of children with FASD also are at increased risk for adverse outcomes including financial difficulty, stress, and premature death from alcohol-related illnesses, or other alcohol-related causes such as suicide, homicide, falls, and car accidents, which may add to the problems of children with FASD [12,46,79].

Children with FASD have greater rates of neurodevelopmental comorbidities than children without FASD [80]. They also experience more adverse childhood experiences (ACEs), such as neglect; abuse; household dysfunction, including parental substance use; domestic violence; and parental separation or divorce. A retrospective study found that almost 50 percent of 1- to 17-year-old children with prenatal alcohol exposure faced at least four ACEs, and females experienced significantly more ACEs, especially sexual abuse, than males [13]. It can be difficult to determine the relative effects of prenatal alcohol exposure from postnatal ACEs. Although prenatal alcohol exposure appears to have an independent effect on neurodevelopmental comorbidities [81], the more ACEs a child encounters, the greater the risk of neurodevelopmental comorbidity. (See "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Associated problems'.)

In a longitudinal cohort, the lifetime prevalence of the following adverse outcomes among adolescents and adults with FASD were as follows [12]:

●Inappropriate sexual behavior on repeated occasions (eg, exposure, inappropriate sexual advances or touching, promiscuity) – 49 percent

●Disrupted school experience (suspended, expelled, dropped out) – 61 percent

●Trouble with the law (eg, charged, arrested, convicted) – 60 percent

●Confinement (in juvenile detention, jail, prison, psychiatric hospital, inpatient alcohol/drug treatment) – 50 percent

●Alcohol or drug problems – 35 percent

Factors associated with fewer adverse outcomes include [3,12]:

●Diagnosis before six years of age

●Eligibility for social and educational services

●Stable and nurturing living environment

●Absence of exposure to physical, sexual, or other types of violence

●Diagnosis of FAS rather than one of the other FASDs, probably related to earlier diagnosis and intervention

PREVENTION — FASD is the leading preventable cause of congenital anomalies and developmental disorders in United States [82]. Prevention of FASD is a primary goal of the Centers for Disease Control and Prevention (CDC) and other professional groups [3,4,31,32,75,83].

Prevention strategies for primary care providers may include [75,83]:

●Education of students of all ages, women of child-bearing age, and mothers and their partners about the effects of alcohol on a fetus and about FASD (see "Fetal alcohol spectrum disorder: Clinical features and diagnosis", section on 'Clinical features')

●Promotion of abstinence from drinking alcohol before conception and during pregnancy; however, given that approximately one-half of pregnancies in the United States are unplanned [84], the CDC recommends provision of appropriate contraception for sexually active women who drink alcohol and do not want to become pregnant [85]

●Screening to identify high-risk mothers who are pregnant and referring to appropriate programs; the identification and management of alcohol use in pregnancy are discussed separately (see "Alcohol intake and pregnancy")

RESOURCES — Additional information about FASD is available from the following websites:

●American Academy of Pediatrics Fetal Alcohol Spectrum Disorders

●The 2015 Canadian Guidelines for diagnosis of FASD across the lifespan

●The Centers for Disease Control and Prevention

●FASD Hub Australia (provides information about diagnosis and management of FASD, including e-learning modules)

●Australian National Organization for Fetal Alcohol Spectrum Disorders (provides a toolkit for parents, caregivers, and families)

●Office of Special Education Intervention IDEAS for infants, toddlers, children and youth impacted by FASDs (provides information about interventions for infants, children, and adolescents affected by FASD)

●Substance Abuse and Mental Health Services Administration

●FASD United

●University of Washington FAS Diagnostic and Prevention Network

●All About Me, which describes strengths, vulnerabilities, and most effective ways to help children and adolescents with FASD and can be given to teachers, therapists, and other professionals who work with children and adolescents with FASD

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Fetal alcohol spectrum disorder" and "Society guideline links: Alcohol consumption".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or email these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient education" and the keyword[s] of interest.)

●Basics topic (see "Patient education: Fetal alcohol syndrome (The Basics)")

SUMMARY

●Fetal alcohol spectrum disorder (FASD) is an umbrella term that encompasses the range of physical, mental health, behavioral, and cognitive effects that can occur in individuals with prenatal alcohol exposure. It encompasses fetal alcohol syndrome, partial fetal alcohol syndrome, and neurobehavioral disorder associated with prenatal alcohol exposure, sometimes called neurodevelopmental disorder associated with prenatal alcohol exposure (table 1). (See 'Terminology' above.)

●The roles of the primary care provider in the management of FASD include early identification and provision of education, anticipatory guidance, family support, and a medical home. (See 'Role of the primary care provider' above.)

●Interventions for FASD usually are individualized according to the strengths and needs of the patient and their family. Most individuals with FASD benefit from multiple types of intervention (eg, occupational therapy, speech and language therapy, behavior therapy, pharmacotherapy, etc). (See 'Approach to management' above.)

●General strategies that parents and caregivers can implement to improve behavior of children with FASD include (see 'General recommendations' above):

•Increasing the predictability and structure of the environment

•Using visual prompts and sequences to reinforce and remind children how to perform activities of daily living

•Developing behavior plans built on positive reinforcement and healthy discipline strategies

•Simplifying the environment (eg, avoiding multi-step commands, reducing distractions)

●Specific interventions may be used to target academic, executive function/self-regulation, social, and adaptive skills. Caregiver training may be helpful in reducing behavior problems. (See 'Targeted interventions' above.)

●Children with FASD are at increased risk for adverse outcomes including school problems (eg, suspension, expulsion, dropping out), trouble with the law, incarceration, homelessness, unemployment, substance use disorder, chronic mental health problems, and premature death. Diagnosis before age six years, receipt of social and educational services, and a stable and nurturing living environment are associated with improved outcomes. (See 'Prognosis' above.)