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

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]

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.

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.

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.

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.

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).

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.

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.

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.