Fetal Alcohol Spectrum Disorders: Pediatric Primary Care Guide

Guidance for primary care clinicians diagnosing and managing children with fetal alcohol spectrum disorders

Abstract

Fetal alcohol spectrum disorders (FASDs) represent a continuum of preventable neurodevelopmental conditions resulting from prenatal alcohol exposure. FASDs are among the most common and underdiagnosed developmental disabilities, with lifelong implications for affected individuals and their families. These disorders encompass physical, cognitive, behavioral, and functional impairments that can be challenging to diagnose. This article provides a comprehensive review for pediatric primary care clinicians to identify, diagnose, and manage children with FASDs. It outlines the diagnostic criteria for the 4 recognized subtypes—fetal alcohol syndrome (FAS), partial FAS (PFAS), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD). It also reviews common comorbidities such as attention-deficit/hyperactivity disorder (ADHD), mental health disorders, language impairments, and discusses evidence-based interventions including behavioral therapies, educational supports, and pharmacologic treatments. Special attention is given to the importance of early detection and diagnosis, the challenges of confirming maternal alcohol use, identifying and treating comorbidities, supporting development, and addressing caregiver stress by providing strategies for family support. Equipping clinicians with practical tools and current guidelines can improve outcomes through early diagnosis, targeted interventions, and coordinated care within the medical home.

Keywords: Fetal alcohol spectrum disorders, FASD, fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder, alcohol-related birth defects, prenatal alcohol exposure, maternal alcohol use, behavioral problems, cognitive impairment, executive function deficits, developmental delays, growth deficiencies, facial dysmorphology, learning disabilities, attention deficit hyperactivity disorder, ADHD, mental health, comorbid conditions, early diagnosis, early intervention, multidisciplinary evaluation, special education, neuropsychological testing, genetic testing, neurodevelopmental disorders, congenital heart defects, sleep disturbances, social skills, educational interventions, behavioral interventions, language disorders, parenting stress, substance abuse, transition to adulthood, supported employment, special needs services, visual perception, memory deficits, adaptive functioning, therapeutic strategies, stimulant medication, underweight, overweight, obesity, foster care, adoption, child development, diagnostic criteria.

Introduction

FASDs are a continuum of disabilities that have in common brain damage and sometimes facial dysmorphisms due to the effects of alcohol on a developing brain. FASDs are the most preventable developmental disorders in the world¹. The 4 categories of FASDs are:

• Fetal alcohol syndrome (FAS) – a recognizable pattern of dysmorphic features, growth deficiency, structural brain malformations, and neurobehavioral disabilities.
• Partial fetal alcohol syndrome (PFAS) – may not involve the obvious growth deficiency or facial abnormalities and frequently goes undetected.
• Alcohol-related neurodevelopmental disorder (ARND)  –  behavioral and/or cognitive deficits but normal growth and structural development.
• Alcohol-related birth defects (ARBD) – facial dysmorphology and other structural anomalies of FAS but no growth or development issues.

FASDs are diagnoses of exclusion and usually require a multidisciplinary evaluation to ensure an accurate diagnosis. Confirming maternal alcohol use is one of the biggest challenges and is not required by some criteria. Early identification, referral, and intervention are especially important for improving long-range outcomes. The main goal of management is to minimize the impact of FASDs on development, function, learning, and the family through behavioral, educational, and therapeutic strategies. At this time, scientific consensus is that NO amount of alcohol during pregnancy is safe².

Key Points

Early diagnosis of FASDs
Early identification of children with FASDs allows for early developmental intervention and other therapeutic services. It can also lead to parenting support and substance abuse intervention for the child’s parents, possibly before a subsequent pregnancy. Children with FASDs often have deficits in verbal and spatial learning, planning, working memory, cognitive flexibility, inhibition, and adaptive functioning. They also have much higher rates of learning disabilities in the areas of reading, spelling, and mathematics. A diagnosis of FAS may help with obtaining coverage for services.

Red flags for FASDs
A high index of suspicion is the most valuable tool for identification in children with:

• Learning difficulties
• Developmental problems
• Growth restrictions
• Behavioral concerns
• School failure
• Involvement in foster care or the adoption process, including international adoptees, especially when the child exhibits poor growth³

Most children with FASDs lack characteristic physical findings of FAS yet have significant functional impairment. The diagnosis is more easily made after the newborn period when the behavioral and/or facial features become more evident.

Goals of management
The main goal of management is to minimize the impact of FASDs on development, function, and the family through behavioral, educational, and therapeutic strategies. Children with FASDs also need routine preventive care, treatment of acute illnesses, and management of co-occurring medical and psychiatric issues that are informed by knowledge of their diagnosis. FASDs can affect adherence and the ability to follow through on recommendations. Collaborating with educational providers to improve behavior and the individual’s capacity in school is especially important. Connecting caregivers with local support and other resources can empower them to nurture successfully and advocate effectively.

Treating ADHD in children with FASDs
FASD has been identified as the leading cause of ADHD⁴,  and attention deficit is one of the most common symptoms of FASDs. Executive functioning deficits, which are a core feature of ADHD and contribute to significant functional and adaptive impairments, are also commonly found with FASDS. While a trial of stimulant medication is often warranted, children with FASDs may be more sensitive, requiring lower doses or not responding as consistently as other children. Depending on the comorbid condition, other medications that might be used include antidepressants, neuroleptics, and anti-anxiety drugs.

Growth or weight gain
Growth retardation is a common feature of FASDs, and poor height and/or weight gain can pose a special problem in the pharmacological management of ADHD, which may result in appetite reduction. Loading the child’s diet with calories while maintaining effective dosages of stimulant medication may help. Although underweight tends to persist in those who meet full FAS criteria, children with PFAS/ARND have higher rates of overweight and obesity by adolescence²⁴.

Congenital heart disorders
The congenital heart conditions found in children with FASDs, such as conotruncal defects and ventricular septal defects, are also common in the general population. If the individual has a rare congenital heart disorder, consider conditions other than FASDs.

Bacterial infections
Maternal alcohol use increases the risk of chorioamnionitis by 5 to 7 times⁵. Alcohol-exposed infants who are small for gestational age have 2.5 times the risk of bacterial infection in the neonatal period and 3 times the risk of neonatal infection when maternal consumption of 7 or more drinks weekly occurred during pregnancy⁵. 

Practice Guidelines

Hoyme HE, Kalberg WO, Elliott AJ, et al. Updated Clinical Guidelines for Diagnosing Fetal Alcohol Spectrum Disorders. Pediatrics. 2016;138(2):e20154256. doi:10.1542/peds.2015-4256. Pediatrics. 2016;138(2)¹. 
American Academy of Pediatrics (AAP) clinical guidelines for diagnosing FASDs.

Williams JF, Smith VC, Committee on Substance Abuse. Fetal Alcohol Spectrum Disorders. Pediatrics. 2015;136(5):e1395-1406. doi:10.1542/peds.2015-3113⁶.
Focuses on the role of primary care in the prevention, intervention, and treatment of FASDs. Reaffirmed by the AAP in 2021.

Additional guidelines developed by the Institute of Medicine, University of Washington, Canada, and the National Center for Birth Defects and Developmental Disabilities are also helpful when considering the diagnosis.

Diagnosis

FASDs are diagnoses of exclusion and usually require a multidisciplinary evaluation to ensure accurate diagnosis. The diagnosis often starts with a suspicion of an FASD and includes documented/undocumented alcohol exposure, dysmorphology, and neuropsychology¹.

History

Confirming a maternal drinking history is notoriously difficult and may be impossible for children who are adopted or in foster care. Because alcohol use during pregnancy is usually a sensitive topic, questions should be asked non-judgmentally. Working to create mutual trust and respect, practicing empathy, and using accepting body language can help individuals feel safe in revealing risky behavior, painful family behavioral histories, and stigmatizing or sensitive information. Open-ended questions, such as “Please help me understand more about your family in relation to alcohol and drugs,” are often helpful. There are a variety of conditions that constitute documented prenatal alcohol exposure, including¹:

• Greater than or equal to 6 drinks/week for greater than or equal to 2 weeks during pregnancy
• Greater than or equal to 3 drinks per occasion on greater than or equal to 2 occasions during pregnancy
• Documentation of alcohol-related social or legal problems in proximity to pregnancy
• Documentation of intoxication during pregnancy by blood, breath, or urine alcohol content
• Positive testing with established alcohol-exposure biomarkers during pregnancy or at birth
• Increased prenatal risk associated with drinking during pregnancy as assessed by a validated screening tool

Presentations

The impact of alcohol on the fetus depends on the timing (e.g., first trimester vs. later trimester), pattern (e.g., daily vs. binge), and magnitude (e.g., chronic vs. occasional) of use, as well as fetal and parental genetics^7,8. Facial dysmorphology and internal organ malformation tend to be more associated with significant first-trimester fetal alcohol exposure and can occur before pregnancy is recognized. Alcohol consumption starting after the first trimester is associated with neuropsychological deficits. As with all teratogens, exposure does not cause impairment in all individuals, nor does the impairment from exposure affect individuals in the same way. Concurrent exposure to other drugs can potentiate the adverse effects of alcohol teratogenicity⁹. 

Facial dysmorphology may become more readily apparent in early childhood, including a thin upper lip, smooth philtrum, and small palpebral fissures. Occasionally, severe multiple congenital anomaly syndromes, ranging from cyclopia to congenital heart defects, with other malformations and minor anomalies, may occur. Various other nonspecific abnormalities may be present, including pre- and post-natal growth restriction, microcephaly, and eye abnormalities like visual impairment, strabismus, and small optic discs^10,11. A child with FASD may also demonstrate a characteristic neurobehavioral profile (e.g., cognitive and functional deficits, described below) without having dysmorphic features.

Diagnostic Criteria

Fetal Alcohol Syndrome (FAS)

A diagnosis of FAS requires all of the following features, with or without documented prenatal alcohol exposure¹:

• A characteristic pattern of minor facial anomalies (at least 2: short palpebral fissures, thin vermillion border of upper lip, smooth)
• Prenatal and/or postnatal growth deficiency (height and/or weight <10th percentile)
• Brain abnormalities (microcephaly, structural brain anomalies, or recurrent nonfebrile seizures)
• Neurobehavioral impairment without or without cognitive impairment or developmental delay

Partial Fetal Alcohol Syndrome (PFAS)

With documented prenatal alcohol exposure, a diagnosis of PFAS requires both of the following¹:

• A characteristic pattern of minor facial anomalies (at least 2: short palpebral fissures, thin vermillion border of upper lip, smooth philtrum)
• Neurobehavioral impairment without or without cognitive impairment or developmental delay

Without documented prenatal alcohol exposure, a diagnosis of PFAS requires all of the following:

• A characteristic pattern of minor facial anomalies (at least 2: short palpebral fissures, thin vermillion border of upper lip, smooth philtrum)
• Prenatal and/or postnatal growth deficiency (height and/or weight <10^th percentile) or brain abnormalities (microcephaly, structural brain anomalies, or recurrent nonfebrile seizures)
• Neurobehavioral impairment with or without cognitive impairment or developmental delay

Alcohol-related neurodevelopmental disorder (ARND)

A diagnosis of ARND requires all of the following¹:

• Age >3 years
• Documented prenatal alcohol exposure
• Neurobehavioral impairment with or without cognitive impairment

Alcohol-related birth defects (ARBD)

A diagnosis of ARBD requires both of the following¹:

• Documented prenatal alcohol exposure
• One or more specific and major malformation:
  • Cardiac: atrial septal defects, aberrant great vessels, ventricular septal defects, conotruncal heart defects
  • Skeletal: radioulnar synostosis, vertebral segmentation defects, large joint contractures, scoliosis
  • Renal: aplastic, hypoplastic  or dysplastic kidneys, horseshoe kidneys, ureteral duplications
  • Eyes: strabismus, ptosis, retinal vascular anomalies, optic nerve hypoplasia
  • Ears: Conductive or neurosensory hearing loss

Note that, except for FAS, the criteria for the other categories have not been fully accepted by the American Academy of Pediatrics.

Prevalence

FASDs occur in all socioeconomic and cultural groups. The incidence varies in different regions of the world; it is low in countries where alcohol is prohibited and as high as 11.1% in South Africa. A global meta-analysis suggests a prevalence of 0.15%, but if the total spectrum is considered, the prevalence may be as high as 0.77%¹². In the US, the spectrum of FAS disorders ranged from 1.1 to 5%, depending on diagnostic criteria used¹³.

Differential Diagnosis

The assignment of an FASD is a complex medical diagnostic process best accomplished through a multidisciplinary approach¹. Differential diagnoses should always include genetic disorders or conditions arising from other teratogens. Additionally, because head circumference, growth, and many cognitive and behavioral characteristics have moderate to high degrees of heritability, when available about the biological parents, these data should be considered in the final diagnostic decision.

Consider the possibility of other genetic conditions (e.g., Williams, Cornelia de Lange, and velocardiofacial syndromes) if a child has the characteristic facial features of FAS plus findings that are not characteristic of an FASD⁶.

Children with FASDs are usually more able than autistic children to use gestures and nonverbal communication to interact, demonstrate empathy, and express enjoyment in social overtures. ASD and FASDs differ in their characteristic patterns of cognitive disability. One study found that 79% of children with ASD had a higher nonverbal than verbal IQ; the opposite was true for children with FASDs¹⁴. 

Co-occurring Conditions

• ADHD: FASD is the leading cause of ADHD, according to recent research. Children diagnosed with an FASD may be up to 17 times more likely to meet criteria for ADHD¹⁶. 
• Mental illness: The most prevalent comorbid conditions, apart from ADHD, include depression, anxiety disorders, post-traumatic stress disorder, oppositional defiant disorder, and conduct disorder¹⁷. Adults with known maternal alcohol exposure had greater rates of mental health disorders¹⁸. 
• Language disorders: both receptive and expressive language can be affected and may warrant evaluation/treatment by a speech language pathologist¹⁹
• Substance abuse: One study found that 60% of adults with FASDs met criteria for alcohol or drug dependence²⁰.  

Testing

There is no diagnostic test for FASDs. Instead, diagnosis is by criteria as described above.

Formal developmental, psychological, and/or neuropsychological testing should be considered when there is a concern for the following deficits:

1. Global cognitive deficit (decreased IQ or developmental delay in those too young for formal IQ assessment)
2. Cognitive deficits or significant developmental discrepancies (e.g. specific learning disabilities, especially math and/or visual-spatial deficits)
3. Executive function deficits
4. Motor functioning delays or deficits (gross and/or fine motor)
5. Attention and hyperactivity problems
6. Social skills problems
7. Other domains include sensory deficits, pragmatic language problems, memory deficits, and difficulty responding to common parenting practices

Genetic Testing

Because the phenotype of FAS overlaps with a number of genetic conditions, obtaining a microarray, exome sequencing, or other specific genetic tests to assess for aneuploidy may help refine the differential diagnosis²¹. In particular, a microarray may reveal a genetic etiology instead of an FASD for children with atypical features or family histories of learning difficulties, structural anomalies, or recurrent pregnancy loss.

Imaging

Imaging is not routinely recommended. If there is clinical concern for multiple congenital anomalies, an MRI of the brain may document structural central nervous system defects; an echocardiogram may demonstrate cardiac defects, such as atrial or ventricular septal defects or aberrant great vessels; and ultrasonography of the kidneys may show aplastic/hypoplastic/dysplastic kidneys, “horseshoe kidneys,” or ureteral duplications.

Genetics

Though FASDs were thought to be an environmental condition, FASD is caused by a complex interaction of both parental and fetal genes and the environment⁸.  Also, tendencies to misuse and abuse alcohol and substances can be heritable.

Prognosis

Early identification, individually tailored interventions, and prevention of secondary disabilities hold the greatest potential for optimizing outcomes and minimizing common behavioral manifestations. Early action remains challenging, especially when adoptive parents may not recognize neurodevelopmental impairments that warrant intervention and biological parents may be suffering from alcohol dependency, social stigmatization, economic marginalization, mental health issues, or an FASD of their own²². 

Treatment & Management

Children with FASDs usually require a multidisciplinary approach to ensure the most effective outcomes. Interventions for developmental problems often involve specialist physicians, allied professionals, and educators. Success hinges on implementation of the care plan at home, in the school system, and through the entire medical process. No medications treat the underlying injury of FASDs; rather, medications can target comorbidities that have a substantial impact on a child’s functioning and quality of life.

Screening for Comorbidities

There are no guidelines for screening comorbid conditions in children with FASDs. Consider screening for commonly co-occurring conditions on a case-by-case basis using these free tools:

• ADHD: The Vanderbilt Assessment Scales – Parent and Teacher Initial and Follow-Up Scales with Scoring Instructions (NICHQ) has initial and follow-up assessments for teacher and parent informants.
• Mental health issues: The Pediatric Symptom Checklist (PSC) and Youth Report (Y-PSC) facilitate recognition of cognitive, emotional, and behavioral problems. It includes a 35-item checklist for parents or youth and scoring instructions.
• Substance abuse: Car, Relax, Alone, Friends, Forget, Trouble (CRAFFT 2.1/2.1+N) is a 6-question behavioral health screen for adolescents at high risk for alcohol and other drug use disorders.

Development

Infants: Sensory and regulatory problems are common. Poor sleep-wake cycles, irritability, failure to thrive, and nursing difficulties are reported frequently.

Toddlers and preschoolers: Common issues include fine and gross motor delays, failure to comply with parental or other authority, loss of previous learning, poor sleep patterns, and toileting difficulties. Children may be fidgety, easily distracted, or unable to focus attention. Sensory issues might emerge or become more pronounced, like hypersensitivity to certain food textures, sounds, and fabrics.

School-age children: While school-age children may have neurocognitive deficits across all areas and domains of function, attention problems are particularly common. Executive functioning deficits become more apparent as children are expected to learn more abstract concepts, including understanding cause-and-effect relationships and learning from mistakes. Visual-spatial abilities and math skills are often weak. Social skill deficits (e.g., understanding social boundaries, reading social cues, and relating to peers) become more apparent as children age.

Adolescents: The cognitive, behavioral, and functional problems associated with FASDs usually persist and may be magnified, putting teens at risk for any combination of anxiety, depression, poor self-esteem, and substance use.

Growth Parameters

Information about prenatal and postnatal growth (height, weight, and head circumference) should be documented. Small stature, poor growth, and failure to thrive are common, but no specific interventions have been found to be particularly effective. Head circumference is generally at or below the 10th percentile. The CDC recommends plotting growth on the World Health Organization (WHO) charts for ages 0-2 and the CDC charts for 2-18 years. Clinicians must be alert to other medical conditions that may cause or contribute to abnormal growth. While the child with FAS may be growth deficient in height and/or weight, other children with an FASD will demonstrate normal growth. Additionally, psychotropic medications may affect appetite and, subsequently, weight.

Typically, but not universally, higher degrees of growth restriction and dysmorphology coincide with increased severity of neurodevelopmental disability²³. Poor growth and weight gain could pose a concern when treating ADHD since stimulant medications frequently reduce appetite and resultant weight loss. Calorie-packing the child’s diet can help while maintaining effective dosages of medication. If this is insufficient, non-stimulant ADHD medications such as alpha agonists or norepinephrine modulators could be considered.  Although underweight tends to persist in children who meet FAS criteria, those with PFAS/ARND diagnoses have higher rates of overweight and obesity by adolescence²⁴.  

Learning/Education

Children with FASDs often have deficits in verbal and spatial learning, planning, working memory, cognitive flexibility, and inhibition. They also have much higher rates of learning disabilities in the areas of reading, spelling, and mathematics. A diagnosis of FAS may be helpful in obtaining coverage for services, particularly within school systems. Special education placement may be valuable. FASDs are not currently specified in the IDEA Part B legislation or regulations; however, special education designations that might be appropriate include intellectual disability, learning disability, language disorder, other health impaired, and, in rare cases, autism. A child might qualify for services under 504 plans that provide for the education of children with special needs who do not qualify as special education students.

A full neuropsychological evaluation is recommended to sort out various weaknesses (and strengths) in a child with an FASD disorder. Establishing appropriate expectations based on formal neurocognitive evaluations sets the child up to succeed. Caregivers will need to reduce distractions, express concrete directions, and manage disruptive behaviors through a systematic, child-specific behavior plan that provides positive reinforcement for desired behaviors.

Specific deficits may include:

• Intellectual ability: Individuals with FAS have lower intelligence quotients (IQs) than those with other FASD diagnoses. Lower IQs with or without facial abnormalities, and normal IQs with facial abnormalities, contribute to the complexities of recognizing FASDs. IQs for those with FASDs may vary in individuals but are stable over time²⁵. 
• Attention and processing speed: Infants, children, and adolescents have slower processing speeds. More specifically, school-age children have deficient processing speed when performing tasks that require effortful (rather than automatic) processing. Infants also have decreased visual reaction time. Continuous performance tests indicate vigilance impairment. These individuals also have difficulty with response inhibition and problems with aspects of attention, investment, organization, and maintenance.
• Executive functioning: Children with FASDs often have impaired executive functioning that affects their ability to complete tasks that require sustained effort. Overall, these individuals struggle with cognitive planning and use ineffective strategies for problem-solving. They have impairment in working memory, response inhibition, and difficulty altering behavior in response to reinforcement contingencies. Nonverbal and verbal fluency tend to be problematic (e.g., generation of words beginning with certain letters under specific constraints).
• Visual perception and visual construction: Visual perception is typically normal unless the individual is performing a task that requires integration of information (e.g., planning and visual motor). IQ may correlate with a person’s ability to integrate information, especially shifting attention from global to local features. Visual construction may be markedly impaired. These deficits can cause children to misunderstand gestures in communication. They can affect handwriting and cause problems with social perception.
• Learning and memory: Conditioning and habituation are diminished in infants. Children struggle with delayed object recall but not immediate object recall. Delayed free recall is affected but not delayed recognition, which is attributed to problems with encoding rather than memory. Once established, the retention of memory is comparable to that of typical individuals, though those with FASDs may require alternative teaching methods or more trials to ensure mastery. In general, both visual and verbal learning and memory are impaired.
• Number processing: Individuals with FASDs struggle with number processing, which stems from deficits with calculation and cognitive estimation rather than deficits with the simpler tasks of reading and writing numbers.writing numbers.

Educational and Cognitive Interventions

These interventions address cognitive and executive functioning impairments that can interfere with learning and appropriate classroom behavior. Deficits in verbal and spatial learning, planning, working memory, cognitive flexibility, inhibition, problem-solving, reading, spelling, and math call for teaching strategies and classroom modifications:

• Cognitive control therapy (CCT): Teaches strategies for acquiring and organizing information. Key areas targeted include 1) being more aware of body position and movements; 2) focal attention through scanning and then prioritizing information; 3) processing information while distracting stimuli are present; 4) controlling external information; and 5) categorizing information. In one study, children who completed CCT were reported by teachers to have improved classroom behavior, academic achievement, writing skills, self-confidence, and a better attitude toward school and learning.
• Language and literacy training: Focuses on enhancing pre-literacy and early literacy skills in 9-year-olds with FASDs^11,21.
• Self-regulation intervention: Focuses on enhancing self-regulation skills and improving executive functioning deficits in 6- to 11-year-old children with FASDs who have been adopted or are in foster care²⁶. 
• Mathematics training: Focuses specifically on math learning disabilities, which are common in children with FASDs. Before being assigned to treatment or control arms, caregivers attend 2 workshops to learn about FASDs and receive instructions on promoting positive behavioral regulation skills in their children²⁷. 
• Working-memory strategies: Teaches rehearsal strategies to improve working memory. For example, with rehearsal training, children are first tested with a digit span memorization task. Afterward, the children are taught to “keep whispering the names of the items (or digits) over and over in your head.” In this way, children “rehearse” the information, making it easier to later recall. There is behavioral and caregiver-reported evidence that children who are specifically taught to rehearse in this way will later demonstrate spontaneous use of this technique for working memory tasks²⁸. 

Behavioral Intervention

Some children with an FASD and significantly disruptive behavior may be placed in a classroom setting with an emphasis on behavioral management that uses a clear, concrete, positive reinforcement schedule to shape behaviors into more appropriate interactions with peers and adults.

Mental health/behavior interventions typically involve a combination of parent training or education, teaching children specific skills that they would have otherwise learned through observation, and integrating these skills into existing treatment systems. Behavioral interventions have been shown to improve function in school-age children affected by an FASD²⁶. Interventions focused on adaptive skills (communication, socialization, and personal and community skills) include:

• Parent education and training interventions: Various programs exist that focus on FASD education and parenting skill development; results included improved child behavior and decreased parent stress.
• Social skills interventions: Skills include interacting with peers in a way that leads to common-ground activities, peer entry, and play; parents receive instruction in peer network formation³⁰. 
• Safety skills interventions: Computer games are used to teach fire and street safety¹⁸. 

As children become adolescents, new social problems tend to manifest first at school. Children who are socially disinhibited and have poor executive functioning may want to connect with others but may be easily drawn to social groups and other children who have behavioral problems. The child with an FASD can then have difficulty evaluating the consequences of actions that peers encourage (e.g., buying cigarettes for peers to make friends). Individuals with an FASD are at much higher risk for legal troubles.

Family

Raising a child with an FASD is associated with high parenting stress. In this model, the stress of raising a child with a disability is a function of the child’s characteristics, parental perception of the child’s disability, and access to resources within and outside the family. Of children with FASDs, only around 15-20% are being raised by their biological parents; most are raised by foster or adoptive parents who may be extended biological family members. Another unique stressor is the difficulty in obtaining an FASD diagnosis, particularly when key facial features and a history of maternal drinking during pregnancy are lacking, and the diagnosis is key to accessing many services. Children with FASDs may also face the problem of “an invisible disability” because their intellectual impairment is not made apparent by physical characteristics.

In one study, 95% of parents of children with an FASD scored at or above the 90th percentile for parenting stress, particularly on measures of severity of difficult behaviors, negative parent-child interactions, and pessimism related to the child’s future ability to become independent³¹. A study that included biological mothers who retained custody of their FASD-affected children found shame, guilt, and judgment as unique contributors to stress. Adoptive families in the same study described grief, which was exacerbated if they were not aware of the alcohol exposure at the time of adoption³². 

Children with FASDs often have tantrums and display aggression and destructive behaviors. Because contingency learning is often poor, the logical consequences used to manage behavior in neurotypical children are largely ineffective. Learning and memory are also often affected, making rigid routines and frequent cueing necessary to teach the basic activities of daily living. This adds to frustration because of the need to teach and re-teach the same skills (e.g., how to tie shoes).

Parent-focused interventions equip caregivers with strategies to reduce stress, increase self-efficacy, and foster more positive parent-child relationships. Structure, brevity, and persistence are key when working with children with FASDs. Although each child is unique, the following tips can be helpful (for neurotypical kids also):

• Concentrate on the child’s strengths and talents.
• Accept the child’s limitations.
• Be consistent with everything (discipline, school, behaviors).
• Use concrete language and examples.
• Use stable routines that do not change.
• KIS: Keep it simple.
• Be specific; say exactly what you mean.
• Structure the child’s world to provide predictability and consistency.
• Use visual aids, music, and hands-on experience to assist with the learning process.
• Supervise friends, visits, and routines.
• Repeat, repeat, repeat.

For children remaining with the birth family, be aware that parental drinking may persist. Intervention for family alcohol abuse is beyond the scope of this article, but many resources are available.

Sleep

Problematic sleep behaviors (though not formal sleep disorders) are 5 times more common in FASD-affected children than in controls³³. Sleep-related problems in the FASD-affected group included increased bedtime resistance, greater sleep anxiety, delayed sleep onset, more nighttime awakenings, increased incidence of parasomnias (e.g., nightmares, enuresis), and shorter overall sleep duration (waking earlier than necessary or desired by the family)³⁴. FASD-affected children also had more difficulty returning to sleep after nighttime awakenings, which frequently resulted in problematic and sometimes unsafe behaviors such as climbing on furniture, accessing dangerous household items (e.g., knives), or excessive eating. These sleep problems were associated with a relatively high degree of caregiver and family stress. Sleep disturbances in children with FASD may arise from abnormalities in central respiratory modulation, upper airway obstruction, and damage to neural circuitry in the suprachiasmatic nucleus, suggesting further workup for sleep concerns in this population³⁵.

Encouragement and maintenance of sleep hygiene are first-line treatments, while keeping in mind that children with FASDs are less able to adapt to even minor changes³⁶.  Consistent bedtimes and related activities can be helpful. Deficient or inappropriate functioning of melatonin in children with FASDs suggests consideration of melatonin therapy³⁷. Medications, such as clonidine, may be used to help with impulsivity/hyperactivity and also aid in sleep onset. Comorbid anxiety may also contribute to difficulty with sleep, warranting further evaluation and treatment if necessary.

Transitions

Transition to adult care and social services is a major function of the medical home and may present significant challenges for the young adult with FASDs. The American Academy of Pediatrics recommends starting the transition as early as 12-13 years of age, with a discussion of the office transitions policy with the child and parents.

Some of the services for which individuals with a FASD diagnosis might qualify as they transition to adulthood:

• Supported employment/job coach
• Transportation
• Assisted living
• Respite care
• Social Security disability benefits

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

References

1. Hoyme HE, Kalberg WO, Elliott AJ, et al. Updated Clinical Guidelines for Diagnosing Fetal Alcohol Spectrum Disorders. Pediatrics. 2016;138(2):e20154256. doi:10.1542/peds.2015-4256

2. Ramsay M. Genetic and epigenetic insights into fetal alcohol spectrum disorders. Genome Med. 2010;2(4):27. doi:10.1186/gm148

3. Miller BS, Kroupina MG, Iverson SL, et al. Auxological evaluation and determinants of growth failure at the time of adoption in Eastern European adoptees. J Pediatr Endocrinol Metab JPEM. 2009;22(1):31-39. doi:10.1515/jpem.2009.22.1.31

4. Burd L. FASD and ADHD: Are they related and How? BMC Psychiatry. 2016;16(1):325. doi:10.1186/s12888-016-1028-x

5. Gauthier TW. Prenatal Alcohol Exposure and the Developing Immune System. Alcohol Res Curr Rev. 2015;37(2):279-285.

6. Williams JF, Smith VC, COMMITTEE ON SUBSTANCE ABUSE. Fetal Alcohol Spectrum Disorders. Pediatrics. 2015;136(5):e1395-1406. doi:10.1542/peds.2015-3113

7. Chudley AE, Conry J, Cook JL, et al. Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ Can Med Assoc J J Assoc Medicale Can. 2005;172(5 Suppl):S1-S21. doi:10.1503/cmaj.1040302

8. Mead EA, Sarkar DK. Fetal alcohol spectrum disorders and their transmission through genetic and epigenetic mechanisms. Front Genet. 2014;5:154. doi:10.3389/fgene.2014.00154

9. Popova S, Dozet D, Shield K, Rehm J, Burd L. Alcohol’s Impact on the Fetus. Nutrients. 2021;13(10):3452. doi:10.3390/nu13103452

10. Charness ME. Fetal Alcohol Spectrum Disorders: Awareness to Insight in Just 50 Years. Alcohol Res Curr Rev. 2022;42(1):05. doi:10.35946/arcr.v42.1.05

11. Tsang TW, Finlay-Jones A, Perry K, et al. Eye Abnormalities in Children with Fetal Alcohol Spectrum Disorders: A Systematic Review. Ophthalmic Epidemiol. 2023;30(4):340-351. doi:10.1080/09286586.2022.2123004

12. Lange S, Probst C, Gmel G, Rehm J, Burd L, Popova S. Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth: A Systematic Review and Meta-analysis. JAMA Pediatr. 2017;171(10):948-956. doi:10.1001/jamapediatrics.2017.1919

13. May PA, Chambers CD, Kalberg WO, et al. Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities. JAMA. 2018;319(5):474-482. doi:10.1001/jama.2017.21896

14. Williams JF, Smith VC, COMMITTEE ON SUBSTANCE ABUSE. Fetal Alcohol Spectrum Disorders. Pediatrics. 2015;136(5):e1395-1406. doi:10.1542/peds.2015-3113

15. Bishop S, Gahagan S, Lord C. Re-examining the core features of autism: a comparison of autism spectrum disorder and fetal alcohol spectrum disorder. J Child Psychol Psychiatry. 2007;48(11):1111-1121. doi:10.1111/j.1469-7610.2007.01782.x

16. Burd L, Klug MG, Martsolf JT, Kerbeshian J. Fetal alcohol syndrome: neuropsychiatric phenomics. Neurotoxicol Teratol. 2003;25(6):697-705. doi:10.1016/j.ntt.2003.07.014

17. Mattson SN, Bernes GA, Doyle LR. Fetal Alcohol Spectrum Disorders: A Review of the Neurobehavioral Deficits Associated With Prenatal Alcohol Exposure. Alcohol Clin Exp Res. 2019;43(6):1046-1062. doi:10.1111/acer.14040

18. Coles CD, Grant TM, Kable JA, Stoner SA, Perez A, Collaborative Initiative on Fetal Alcohol Spectrum Disorders. Prenatal alcohol exposure and mental health at midlife: A preliminary report on two longitudinal cohorts. Alcohol Clin Exp Res. 2022;46(2):232-242. doi:10.1111/acer.14761

19. Popova S, Lange S, Shield K, et al. Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis. Lancet Lond Engl. 2016;387(10022):978-987. doi:10.1016/S0140-6736(15)01345-8

20. Knight JR, Shrier LA, Bravender TD, Farrell M, Vander Bilt J, Shaffer HJ. A new brief screen for adolescent substance abuse. Arch Pediatr Adolesc Med. 1999;153(6):591-596. doi:10.1001/archpedi.153.6.591

21. Douzgou S, Breen C, Crow YJ, et al. Diagnosing fetal alcohol syndrome: new insights from newer genetic technologies. Arch Dis Child. 2012;97(9):812-817. doi:10.1136/archdischild-2012-302125

22. Gomez DA, Abdul-Rahman OA. Fetal alcohol spectrum disorders: current state of diagnosis and treatment. Curr Opin Pediatr. 2021;33(6):570-575. doi:10.1097/MOP.0000000000001071

23. Ervalahti N, Korkman M, Fagerlund A, Autti-Rämö I, Loimu L, Hoyme HE. Relationship between dysmorphic features and general cognitive function in children with fetal alcohol spectrum disorders. Am J Med Genet A. 2007;143A(24):2916-2923. doi:10.1002/ajmg.a.32009

24. Fuglestad AJ, Boys CJ, Chang PN, et al. Overweight and obesity among children and adolescents with fetal alcohol spectrum disorders. Alcohol Clin Exp Res. 2014;38(9):2502-2508. doi:10.1111/acer.12516

25. Streissguth AP, Bookstein FL, Barr HM, Sampson PD, O’Malley K, Young JK. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. J Dev Behav Pediatr JDBP. 2004;25(4):228-238. doi:10.1097/00004703-200408000-00002

26. Bertrand J, Interventions for Children with Fetal Alcohol Spectrum Disorders Research Consortium. Interventions for children with fetal alcohol spectrum disorders (FASDs): overview of findings for five innovative research projects. Res Dev Disabil. 2009;30(5):986-1006. doi:10.1016/j.ridd.2009.02.003

27. Kable JA, Coles CD, Taddeo E. Socio-cognitive habilitation using the math interactive learning experience program for alcohol-affected children. Alcohol Clin Exp Res. 2007;31(8):1425-1434. doi:10.1111/j.1530-0277.2007.00431.x

28. Loomes C, Rasmussen C, Pei J, Manji S, Andrew G. The effect of rehearsal training on working memory span of children with fetal alcohol spectrum disorder. Res Dev Disabil. 2008;29(2):113-124. doi:10.1016/j.ridd.2007.01.001

29. Paley B, O’Connor MJ. Behavioral interventions for children and adolescents with fetal alcohol spectrum disorders. Alcohol Res Health J Natl Inst Alcohol Abuse Alcohol. 2011;34(1):64-75.

30. O’Connor MJ, Frankel F, Paley B, et al. A controlled social skills training for children with fetal alcohol spectrum disorders. J Consult Clin Psychol. 2006;74(4):639-648. doi:10.1037/0022-006X.74.4.639

31. Watson SL, Hayes SA, Coons KD, Radford-Paz E. Autism spectrum disorder and fetal alcohol spectrum disorder. Part II: a qualitative comparison of parenting stress. J Intellect Dev Disabil. 2013;38(2):105-113. doi:10.3109/13668250.2013.788137

32. Sanders J, Buck G. A Long Journey: Biological and non-biological parents’ experiences raising children with FASD. J Popul Ther Clin Pharmacol. 2010;17(2).

33. Hanlon-Dearman A. Sleep characteristics of young alcohol affected children; A quantitative and qualitative analysis. Dep Community Health Sci Univ Manit. Published online 2003.

34. Mughal R, Hill CM, Joyce A, Dimitriou D. Sleep and Cognition in Children with Fetal Alcohol Spectrum Disorders (FASD) and Children with Autism Spectrum Disorders (ASD). Brain Sci. 2020;10(11):863. doi:10.3390/brainsci10110863

35. Wozniak JR, Riley EP, Charness ME. Clinical presentation, diagnosis, and management of fetal alcohol spectrum disorder. Lancet Neurol. 2019;18(8):760-770. doi:10.1016/S1474-4422(19)30150-4

36. Jan JE, Asante KO, Conry JL, et al. Sleep Health Issues for Children with FASD: Clinical Considerations. Int J Pediatr. 2010;2010:639048. doi:10.1155/2010/639048

37. Wasdell MB, Jan JE, Bomben MM, et al. A randomized, placebo-controlled trial of controlled release melatonin treatment of delayed sleep phase syndrome and impaired sleep maintenance in children with neurodevelopmental disabilities. J Pineal Res. 2008;44(1):57-64. doi:10.1111/j.1600-079X.2007.00528.x

Article History

This article was originally published on the Medical Home Portal and updated before publication on TRiP. The Medical Home Portal, retired in July 2024, provided diagnosis and management information for pediatric conditions, guidance for immediate steps after a positive newborn screen result, and in-depth family education to improve outcomes for children with complex medical care needs. The full archive can be found at the Medical Home Portal Archive. 

Topical Reviews in Pediatrics (TRIP) includes archival and updated content from the Medical Home Portal and features new, contemporary topics in pediatrics.   

• 2024 revision: Maggie Bale, MD, MPH ^A
• 2015 revision: Jennifer Goldman, MD, MRP, FAAP^A; Meghan S Candee, MD, MSc^R
• 2013 first publication: Susan Lewin, MD^A

^AAuthor; ^CAContributing Author; ^SASenior Author; ^RReviewer