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Fetal Alcohol Spectrum Disorders

Introduction

Here you’ll find answers to some of the questions that parents often have about this condition. Additional resources are listed at the bottom of the page. Diagnosis and management information can be found in the Fetal Alcohol Spectrum Disorders module, which is written for primary care clinicians but also may be of help to parents and family members.

What are fetal alcohol spectrum disorders and what causes them?

Fetal alcohol spectrum disorders (FASDs) is not a diagnosis and refers to four groupings of fetal alcohol-associated birth defects characterized by varying degrees of growth deficiency, specific dysmorphic features, and central nervous system dysfunction and malformation:
  • Fetal alcohol syndrome (FAS) involves 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) involves behavioral and/or cognitive deficits but normal growth and structural development.
  • Alcohol-related birth defects (ARBD) involves facial dysmorphology of FAS and other structural anomalies but no growth or development issues.
FASDs are diagnoses of exclusion and usually require a multidisciplinary evaluation to ensure 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. Fetal alcohol exposure is among the most preventable causes of common neurodevelopmental disabilities. At this time, scientific consensus is that NO amount of alcohol during pregnancy is safe. [Ramsay: 2010]

What are the symptoms of fetal alcohol syndrome (FAS) and related diagnoses?

The signs and symptoms differ for the different diagnoses:
  • Fetal alcohol syndrome (FAS): Typical facial features (shortened palpebral fissures, indistinct philtrum, thin upper lip), plus pre- or postnatal retardation of height or weight (<10 percentile), plus structural brain defects or microcephaly. Diagnosis is further differentiated by whether prenatal alcohol exposure is confirmed.
  • Partial fetal alcohol syndrome (PFAS): Fewer physical findings associated with full FAS, plus otherwise unexplained behavioral and/or cognitive abnormalities. Diagnosis is further differentiated by whether prenatal alcohol exposure is confirmed.
  • Alcohol-related birth defects (ARBD): Confirmed prenatal alcohol exposure, 2 or more of the characteristic facial findings of FAS, plus at least 1 other major or 2 minor structural defects, as listed:

    Structural Defects Considered "Major"
    Atrial septal defect Ureteral duplication
    Aberrant great vessels Strabismus
    Ventricular septal defect Ptosis
    Conotruncal heart defects Retinal vascular anomalies
    Radoulnar synostosis Optic nerve hypoplasia
    Vertebral segmentation defects Conductive hearing loss
    Large joint contractures Sensorineural hearing loss
    Scoliosis “Horshoe” kidney
    Aplastic hypoplastic Dysplastic kidneys

    Structural Defects Considered "Minor"
    Hypoplastic nails Camptodactyly
    Short fifth digit “Hockey stick” palmar crease
    Clinodactly of fifth digit Refractive errors
    Pectus carinatum or excavatum “Railroad track” ears

  • Alcohol-related neurodevelopmental disorder (ARND): Confirmed prenatal alcohol exposure plus structural brain abnormalities or microcephaly, plus otherwise unexplained behavioral and cognitive abnormalities that result in significant impairment.
Social functioning is impaired as is the capacity for generalizing from one setting to another. Adults with FAS/FASD who have had no intervention continue to be challenged with memory deficits, impaired concentration, cognitive deficits, impaired judgment, inattention, oppositional behavior, and maladaptive social functioning.

How is it diagnosed?

Fetal alcohol syndrome is a clinical diagnosis usually made by a geneticist based on the history of exposure and the presence of specific problems as noted above. FASDs are diagnoses of exclusion and usually require a multidisciplinary evaluation to ensure accurate diagnosis. Confirming maternal alcohol use is one of the biggest challenges and is not required by some criteria.

What is the prognosis?

The impact of alcohol on the fetus depends on timing (e.g., first trimester vs. later trimester use), the pattern (e.g., daily vs. binge use), and magnitude (e.g., chronic heavy drinking vs. occasional drinking). [Chudley: 2005] Facial effects and internal organ birth defects result from significant first trimester fetal alcohol exposure and can occur before pregnancy is recognized. If alcohol consumption starts after the first trimester, facial effects are typically absent, but neuropsychological deficits are present. As with all teratogens (exposures that cause birth defects), exposure does not cause impairment in all individuals, nor does the impairment from exposure affect individuals in the same way. Exposure to other drugs at the same time can increase the adverse effects of alcohol birth defects. 

The unremarkable physical appearance of some affected children whose intelligence quotient (IQ) exceeds 70 and who do not meet full criteria for FAS often belies their significant cognitive and behavioral challenges. A study of these children, who often are not linked to services, showed higher risk for delinquency, alcohol, and drug abuse. [Streissguth: 2004] Significant numbers of children in the foster and adoptive care systems may have FASD. 

Early identification, individually-tailored interventions, and prevention of secondary disability hold the greatest potential for optimizing outcomes and minimizing the common behavioral manifestations and their associated shame and anger. [Streissguth: 1997] This remains challenging, especially when adoptive parents may not recognize neurodevelopmental impairments that warrant intervention, and biological parents may have ongoing alcohol dependency, social stigmatization, economic marginalization, mental health issues, or FASD.

What is the risk for other family members or future babies?

There is no risk to individuals in the family or future babies as long as there is no alcohol exposure during pregnancy. Siblings of affected children have a high risk of also having FASD as a result of drinking patterns or alcoholism in the mother.

What treatment/therapy/medications are recommended or available?

No medications treat the underlying injury of FASD, rather medications target other problems that can have a substantial impact of a child’s functioning and quality of life.
Developmental and educational progress are the areas predominantly affected by FASDs and should be followed in a structured fashion to identify problems early. These areas can be divided into cognitive and behavioral domains. Though no “magic bullet” exists to fix the problems encountered by children with FASDs and their families, a number of interventions are evolving and some have been demonstrated to be effective for specific aspects of the condition.
Therapies should address specific problems that the child is experiencing. Infants with suspected FASD should be enrolled in an Early Intervention Part C Program. A variety of specialists and therapies may be helpful depending upon the problem that the child experiences. For example, a child with fine-motor problems may need occupational therapy and a child with attention problems may need specific treatment for attention deficit hyperactivity disorder (ADHD).

How will my child and family be impacted?

Although therapies can help, children with FASD may have lifelong problems. This can be difficult for the child and his/her family. Proactive treatment is important and support from family organizations may be helpful.

How does one distinguish FASD from autism?

Children with FASD are usually more able than children with autism spectrum disorders (ASD) to use gestures and nonverbal communication to interact, and to demonstrate empathy and sharing of enjoyment in social overtures. ASD and FASD also 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 FASD. For more details, see Distinguishing Fetal Alcohol Spectrum Disorders from Autism Spectrum Disorder.

How can I help improve education for my child with FASD?

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 behavior through a systematic, child-specific behavior plan that provides positive reinforcement for desired behaviors.

Resources

Information & Support

Where can I go for further information?

For Parents and Patients

Support

Circle of Hope
For women who consumed alcohol during pregnancy and may have a child or children affected with an FASD; members are known as “Warrior Moms” to recognize their strengths. Organized by the NOFAS Vice President Kathy Mitchell in 2004.

Utah Fetal Alcohol Coalition
The UFAC is a coalition of several community groups, state agencies, and families that provide training, outreach, and a support group for families and professionals.

National Organization on Fetal Alcohol Syndrome
This nonprofit organization provides a wealth of information and links to local resources and summer camps for children with FASDs.

General

Fetal Alcohol Exposure (NIH) (PDF Document 454 KB)
Three-pages of information about the possible consequences of fetal alcohol exposure; National Institutes of Health.

Fetal Alcohol Spectrum Disorders (CDC)
Comprehensive information about FASDs; Centers for Disease Control & Prevention.

Let's Talk FASD (VON) (PDF Document 1.4 MB)
A parenting tool containing Canadian guidelines and additional resources; VON Canada National Office.

Fetal Alcohol Syndrome (MedlinePlus)
Provides an overview of FAS and links to more information about symptoms, diagnosis, research, and more; from the National Library of Medicine.

Strategies and Interventions for Children with FASD (MN Adopt) (PDF Document 20 KB)
Three-page fact sheet with strategies to help parents raise children with FASDs; from the Minnesota Adoption Support and Preservation program.

Therapies that Help Children with FASDs (MN Adopt) (PDF Document 14 KB)
Three-page fact sheet that identified how occupational, physical, and speech therapies can help children with FASDs; from the Minnesota Adoption Support and Preservation program.

Fetal Alcohol Community Resource Center
Information about Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorders (FASD).

Understanding Fetal Alcohol Spectrum Disorders (PDF Document 182 KB)
Provides an overview of FAS, diagnostic information, and more; Substance Abuse and Mental Health Services Administration (SAMSA).

Fetal Alcohol Syndrome info, Mayo Clinic
Provides an overview of FAS, symptoms, risk factors, and support information.

Utah Birth Defect Network
Information about birth defects, prevention, and services from the Utah Department of Health.

Patient Education

A Minute for Kids: FAS (AAP) (MP3 File 64 KB)
Approximately 5,000 children are born each year with Fetal Alcohol Syndrome. Many of these children will develop other learning or behavioral problems. Women who are pregnant or planning a pregnancy should avoid drinking any alcohol to prevent Fetal Alcohol Syndrome. This content requires an audio player such Windows Media Player or the free Winamp Player. From the American Academy of Pediatrics.

Fetal Alcohol Exposure (NIH) (PDF Document 454 KB)
Three-pages of information about the possible consequences of fetal alcohol exposure; National Institutes of Health.

Tools

Timeline Followback Sample Calendar and Instructions (Nova Southeastern University)
Free of charge to help ascertain the level of maternal drinking during pregnancy.

Services

Audiology

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Career Counseling

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Crisis/Emergency Respite

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Developmental - Behavioral Pediatrics

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Developmental Assessment

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Developmental Pediatrics

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Disability Transportation

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Early Intervention for Children with Disabilities/Delays

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Family Medicine

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Family Support Organizations

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Family Support, General

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Fetal Alcohol Spectrum Disorders Clinics

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Independent Living

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Local Support Groups, Disability/Diag

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Mental Health Infant/Preschool

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Nutrition Assessment Services

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Occupational Therapy, Pediatric

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Pediatric Cardiology

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Pediatric Gastroenterology

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Pediatric Genetics

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Pediatric Nephrology

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Pediatric Ophthalmology

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Pediatric Orthopedics

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Pediatric Otolaryngology

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Pediatric Sleep Medicine

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Physical Therapy

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Pregnancy-related, Other

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Psychiatrist, Child-18 (MD)

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Psychologist, Child-18 (PhD, PsyD)

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Residential Treatment Facilities, Children/Adolescent

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Respite Care

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SSI, Supplemental Security Income

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School Districts

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Schools for the Deaf & Blind

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Speech Therapy

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For other services related to this condition, browse our Services categories or search our database.

Studies

Alcoholism clinical trials (NIAAA)
National Institute on Alcohol Abuse and Alcoholism conducts various alcoholism research studies at the NIH campus in Bethesda, Maryland. While participating in medical research, you will receive standard treatment for alcoholism, which includes motivational and cognitive behavior therapies; individual, group and family counseling; and an option of attending self-help groups such as AA and more.

Fetal Alcohol Spectrum Disorders and Children (clinicaltrials.gov)
An up-to-date list of clinical trials related to FASDs

Authors

Contributing Authors: Patrick Shea, MD - 1/2017
Susan Lewin, MD - 2/2014
Reviewing Author: Alfred Romeo, RN, PhD - 3/2017
Content Last Updated: 3/2017

Page Bibliography

Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N.
Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis.
CMAJ. 2005;172(5 Suppl):S1-S21. PubMed abstract / Full Text
Canadian guidelines for the diagnosis of FAS and its related disabilities, developed by broad-based consultation among experts in diagnosis.

Ramsay M.
Genetic and epigenetic insights into fetal alcohol spectrum disorders.
Genome Med. 2010;2(4):27. PubMed abstract / Full Text
The severity of FASD from in utero alcohol exposure depends on many factors, and damage can occur throughout gestation. Preconception alcohol exposure can also have a detrimental effect on the offspring.

Streissguth A, Kanter J ed.
The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities.
1st ed. Seattle: University of Washington Press; 1997. 978-0295976501 http://books.google.com/books?hl=en&lr=&id=UZ8WEp9Ni1QC&oi=fnd&pg=PR7&...

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. 2004;25(4):228-38. PubMed abstract
Clinical descriptions of patients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) suggest major problems with adaptive behavior. Five operationally defined adverse outcomes and 18 associated risk/protective factors were examined using a Life History Interview with knowledgeable informants of 415 patients with FAS or FAE.