What is fetal alcohol spectrum disorders (FASD)?
As defined by U.S. federal agencies, researchers, and other experts at the 2004 Fetal Alcohol Spectrum Disorders Terminology Summit sponsored by FASD United, “Fetal alcohol spectrum disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with lifelong implications. The term FASD is not intended for use as a clinical diagnosis.”

Please note: In order to use less stigmatizing language a revised definition of FASD is now in use. The phrase “in an individual whose mother drank alcohol during pregnancy” has been replaced with “in an individual prenatally exposed to alcohol.”

Findings are developed in part through support form CDC and the Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD)

What are the FASD diagnostic categories?
Fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorders, alcohol-related birth defects, and neurobehavioral disorders associated with prenatal alcohol exposure.

What are the diagnostic criteria for fetal alcohol syndrome (FAS)?

Are there clinical guidelines for primary care practitioners to diagnose FAS?
The Centers for Disease Control and Prevention (CDC), an agency within the U.S. Department of Health and Human Services, in conjunction with the National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect, American Academy of Pediatrics, American College of Obstetricians and Gynecologists, March of Dimes, and FASD United (formerly NOFAS) published Fetal Alcohol Syndrome: Guidelines for Referral And Diagnosis. The guide describes the criteria for an FAS diagnosis, a framework for referral, and appropriate services for affected individuals.

What are the diagnostic criteria for partial fetal alcohol syndrome (pFAS)?

What are the diagnostic criteria for alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD)?

What are the diagnostic criteria for neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE)?

What is fetal alcohol effects (FAE)?
The term FAE was created to describe an individual that had a documented history of alcohol exposure before birth and had signs or impairments associated with FAS but did not meet the criteria for an FAS diagnosis. FAE was never intended or defined as a diagnostic term or category and was abandoned in the 2000s and is no longer in use.

How common is FASD?
In a wide-ranging active case ascertainment study of over 13,000 mixed-population, first-grade students in four regions of the United States, the most conservative prevalence estimate of FASD was found to be as many as 1 in 20 first-grade students. (Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities).

Can parental, pregnancy, and infancy exposures and characteristics predict children who would later be diagnosed with FASD from children who would not?
Researchers are testing, “whether features of pregnancy and infancy—data which are available years prior to a diagnosis—may identify children who are likely to later receive an FASD diagnosis.” Review Predicting fetal alcohol spectrum disorders in preschool-aged children from early life factors to learn how the model works and the further study required to develop an accurate screening tool that could be used with the general population.

Does the Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) diagnosis accurately identify children with heavy prenatal alcohol exposure?
In contrast to the medical diagnoses described under the FASD diagnostic umbrella, “ND-PAE is a mental health diagnosis and is not reliant on a dysmorphology evaluation.” Researchers found validity for the ND-PAE diagnosis, but stressed that, “adaptations to the original criteria may be helpful in order to truly capture ND-PAE risk.” Read the study preprint, Validation of the ND-PAE Diagnosis in Children with Heavy Prenatal Alcohol Exposure, to understand how differences in impairment threshold criteria, age, IQ level, and alcohol exposure affect the results. Researchers note that by, “including this diagnosis in future versions of the DSM (Diagnostic and Statistical Manual of Mental Disorders), children may receive earlier FASD diagnoses and earlier access to care. In addition, this diagnosis can expand the number of individuals with the expertise needed to diagnose and treat conditions associated with PAE.”

Are children adopted internationally from countries where PAE is very high at greater risk for FASD?
A study of children adopted from Russia and Ukraine found at least half met the diagnostic criteria for an FASD, Prevalence of Fetal Alcohol Spectrum Disorders (FASD) among Children Adopted from Eastern European Countries: Russia and Ukraine. The research concludes that it is important to establish an adoption protocol that takes into account FASD and adequately informs families.

What is the annual cost for an individual with FASD?
According to a 2018 analysis of the economic impact of FASD, the annual cost for one individual, including health care, special education, residential care, and productivity losses, is as much as $24,308. (A Multicountry Updated Assessment of the Economic Impact of Fetal Alcohol Spectrum Disorder: Costs for Children and Adults). Adjusting the figure to include the costs associated with juvenile and criminal justice increases the figure to $30,945 per individual with FASD per year. Based on an estimated US prevalence of 2% of the 2020 population of 331 million people the annual cost of FASD to society is as much as $205 billion.

What are the most common developmental disabilities associated with FASD?
The cognitive and behavioral impairments associated with FASD include decreased IQ and deficits in motor skills, attention, executive function (working memory, problem solving, planning, and response inhibition), language, visual perception, adaptive functioning (skills necessary for everyday living), among other neurological abnormalities as described in detail by researchers in Fetal Alcohol Spectrum Disorders: A Review of the Neurobehavioral Deficits Associated with Prenatal Alcohol Exposure.

Do children with FASD experience more problems with sleep than typically developing children?
Preliminary findings published in Sleep problems among children with Fetal Alcohol Spectrum Disorders (FASD)- an explorative study report a significantly higher rate of sleep disorders in children with FASD, including differences in sleep onset delay, night wakings, disordered breathing, daytime sleepiness, and parasomnias (sleep disorders that involve unusual and undesirable physical events or experiences that disrupt sleep).

Do youth with FASD commonly exhibit oppositional and conduct disorders?
According to the authors of Relation Between Oppositional/Conduct Behaviors and Executive Function Among Youth with Histories of Heavy Prenatal Alcohol Exposure, “Youth with prenatal alcohol exposure demonstrate deficits on several aspects of executive functioning. These deficits are evident above and beyond what would be expected based on overall lower intellectual functioning. Parents of youth with prenatal alcohol exposure report significantly worse behavioral executive function abilities [for their children] compared to non-exposed youth with the greatest impairment in problem-solving and inhibitory control. Disorders involving oppositional and conduct behaviors, such as oppositional defiant disorder (ODD) and conduct disorder (CD), are some of the most functionally impairing and are often associated with incarceration and negative outcomes.”

Do children with FASD have an increased risk for poor oral health?
As reported in The oral health status and treatment needs of children with fetal alcohol spectrum disorder, “Children with FASD may be at a higher risk for poor oral health outcomes and have more extensive [dental] treatment needs.”

At what age can a child with FASD be diagnosed?
According to the published paper Early-Life Predictors of Fetal Alcohol Spectrum Disorders, “Assessment of a combination of growth, dysmorphology, and neurobehavioral characteristics allows for accurate identification of most children with FASD as early as 9 to 18 months. Although infancy remains the most effective time for initiation of intervention services, current diagnostic schemes demonstrate the greatest confidence, accuracy, and reliability in school-aged children.”

Can an individual with FASD have more than one medical or behavioral health condition?
An analysis of 127 research studies identified 428 conditions that can occur in individuals with FASD. These include medical diseases, congenital malformations, deformities, chromosomal abnormalities, and mental and behavioral disorders (Comorbidity of Fetal Alcohol Spectrum Disorder: A Systematic Review and Meta-Analysis). This research helps explain why individuals with FASD do not have an identical set of impairments, but instead often have a comparatively unique constellation of diseases and conditions, a factor that complicates the clinical recognition of FASD.

Do the impairments associated with FASD change over the lifespan?
“The disabilities associated with FASDs are said to be lifelong. Many of physical, brain, and neurobehavioral features that are present in children with FASDs will endure to adulthood. However, some features may diminish or change over time. Furthermore, secondary disabilities, such as school drop outs, trouble with the law, and substance/alcohol abuse problems are common in young adults with FASDs.” Learn more in the published study, What Happens When Children with Fetal Alcohol Spectrum Disorders Become Adults?

Do the FASD facial features change as a child ages?
As described in the scientific paper Evolution of the Physical Phenotype of Fetal Alcohol Spectrum Disorders from Childhood through Adolescence, “Key facial features that characterize FASD in early childhood diminish or evolve in some individuals, making diagnostic examinations that rely on these characteristics most sensitive during early childhood and school age. Given that several features and small head circumference diminished with age, many individuals would be misdiagnosed if only examined at a later age.”

Can an individual with suspected FASD be accurately screened when facial features are not present?
Screening tools that combine neurobehavioral and physical measures have been developed to assess children and adults for FASD. Review A Decision Tree to Identify Children Affected by Prenatal Alcohol Exposure for a model that has proven effective in identifying children affected by prenatal alcohol exposure without facial features. A second screening instrument, the Alcohol Related Neurodevelopmental Disorder Behavioral Checklist (ABC), has been found to have very high sensitivity, specificity, and accuracy (A Validation Study of the Alcohol Related Neurodevelopmental Disorders Behavioral Checklist).

What should I do if I suspect my child has FASD?
Tell your child’s doctor of your concerns. Share with their doctor any issues about your child’s development or behavior, and any information you have about possible prenatal alcohol exposure. Ask for a referral to a specialist such as a developmental pediatrician, child psychologist, or clinical geneticist, or contact the FASD United Family Navigator. According to the CDC, if your child is younger than 3 years old you can contact your state’s early intervention program to find out if your child is eligible for a free evaluation and services. If your child is 4 years old or older, contact your local public elementary school to request that she or he be evaluated for preschool special education services.

Are there specific guidelines for the use of prescription medications with an individual with FASD?
Pharmacological treatments are often used to treat attention, dysregulation (poor ability to manage emotional responses or to keep them within an acceptable range of typical emotional reactions), and sleep problems in individuals with FASD, but “No empirically-based guidelines exist regarding optimal treatment,” according to Psychopharmacological Treatments in Children with Fetal Alcohol Spectrum Disorders: A Review. Another study Treatment algorithm for the use of psychopharmacological agents in individuals prenatally exposed to alcohol and/or with diagnosis of fetal alcohol spectrum disorder (FASD), emphasizes the importance of an appropriate environment and dietary, exercise, and sleep support before prescribing medications to an individual with FASD.

What is special education and an Individualized Education Program (IEP), and is my child eligible if she/he has FASD?
Special Education is the range of free public school services that help students with learning differences. An Individualized Education Program (IEP) is a personalized plan, with specific goals and objectives, that describes the services, supports, and supplemental aids a student with an eligible disability will receive while in school. The IEP is based on a comprehensive evaluation of the student’s strengths and needs and is determined by a team of individuals that includes key school staff and the child’s parents.

What is Supplemental Security Income (SSI) and is my child eligible if she/he has FASD?
Children under age 18 can get SSI if they meet Social Security’s definition of disability — a physical or mental condition(s) that very seriously limits their activities — and there are limited income and resources in the household. Comprehensive information from medical, school, and other sources–almost always beyond an FASD diagnosis alone–is necessary to be approved for a monthly payment to help meet the basic needs of a child with a disability. An agency in your state makes the disability decision and, if approved, the resources available to the child from other sources determines the payment amount. Visit SSI for Children to learn more and contact FASD United with questions.

Are individuals with FASD at increased risk for involvement with the criminal justice system?
It has been estimated that individuals affected by FASD are between 19 and 40 times more likely to become involved in the Criminal Justice System, as outlined in Studies Investigating Fetal Alcohol Spectrum Disorders in the Criminal Justice System: A Systematic PRISMA Review.

Are there training courses to help healthcare providers treat individuals living with FASD?
The CDC Collaborative for Alcohol-Free Pregnancy has developed free, FASD-specific online training, and other resources, for nurses, social workers, family practitioners, obstetricians and gynecologists, pediatricians, and medical assistants.

Is there a manual describing the optimal evidence-based clinical approaches to FASD?
A Treatment Improvement Protocol: Addressing Fetal Alcohol Spectrum Disorders published by the Substance Abuse and Mental Health Services Administration (SAMHSA), an agency within the U.S. Department of Health and Human Services, outlines practices for identifying individuals who have or may have FASD and providing appropriate interventions to meet their needs.

Are there medical billing codes for FASD diagnosis, patient care, and preventive services?
There are specific codes for fetal alcohol syndrome and for newborns suspected of being affected by maternal use of alcohol in the International Classification of Diseases (ICD-10-CM). There are numerous additional codes applicable to FASD patient care and prevention services.

Are scientists working to develop new services and treatments to help individuals living with FASD?
The Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD), the world’s largest multidisciplinary FASD research consortium, informs and develops interventions and treatment approaches through multidisciplinary research involving basic, behavioral and clinical investigators and projects.

Does the impaired neurodevelopment observed in children and adolescents continue throughout the lifespan and do adults with FASD continue to show reduced brain volumes relative to adults without FASD?
In the September 2024 published paper, Subcortical volume in middle-aged adults with fetal alcohol spectrum disorders, scientists from the Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD) found that, “adults aged 30 to 65 with FASD showed reduced volumes of subcortical structures relative to healthy comparison adults.” Study authors noted that, “in addition to ongoing behavioural and cognitive deficits, altered neurological structure may have implications for future health as these individuals age.” Consequently, attention should be given to the development of interventions that may reduce the impact of FASD.

© FASD United, 2023, 2024