Idaho Medical Home Portal - Fetal Alcohol Spectrum Disorders (FAQ)

Answers to questions families often have about caring for their child with fetal alcohol spectrum disorders

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 Missing issue with id: 1c2942e5.xml.

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

Related Portal Content
Fetal Alcohol Spectrum Disorders
Assessment and management information for the primary care clinician caring for the child with fetal alcohol spectrum disorders (FASD).

Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.

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.

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.

Fetal Alcohol Syndrome (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

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

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

Patient Education

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 for Patients & Families in Idaho (ID)

Service Categories	NW		NM	NV	OH	RI
Audiology	3	19	8	4	25	28
Crisis/Respite Care	2	12	10	3	13	41
Developmental - Behavioral Pediatrics	1	2	2	2	12	9
Disability Related Employment Programs	4	22	20	4	16	79
Disability Related Transportation	3	10	35	3	10	22
Early Childhood Mental Health Care		5	6		5	23
Early Intervention for Children with Disabilities/Delays	3	35	32	3	14	55
Family Medicine		4	7		71	64
Family Support Services	13	23	68	15	44	37
Fetal Alcohol Spectrum Disorders Clinics		1	1			2
General Counseling Services	1	3	209	1	30	362
Independent Living Arrangements & Skills	1	18	66	1	25	96
Medical Genetics	1	2	5	1	4	8
Nutrition Assessment Services			3	1	2	6
Occupational Therapy	1	17	27	2	19	38
Pediatric Cardiology		2	4		17	5
Pediatric Gastroenterology	1	3	6	1	19	4
Pediatric Nephrology		2	2		10	1
Pediatric Ophthalmology	1	6	6	1	8	4
Pediatric Orthopedics	4	6	8	4	16	21
Pediatric Otolaryngology (ENT)	1	8	5	1	7	10
Physical Therapy		12	11	1	5	48
Psychiatry/Medication Management		2	49		79	56
SSI/SSDI	3	16	17	3	9	11
School Districts		90	22	1	63	47
Sleep Disorders					2	4
Special Education/Schools	3	82	9	4	40	44
Speech - Language Pathologists	4	22	13	4	31	69

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

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)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Authors & Reviewers

Initial publication: October 2012; last update/revision: March 2017

Current Authors and Reviewers:

Authors:	Jennifer Goldman, MD, MRP, FAAP
	Lynne M. Kerr, MD, PhD
Contributing Authors:	Patrick Shea, MD
	Susan Lewin, MD

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.