FAS may be difficult to diagnose, especially in the newborn or adolescent. To make a diagnosis of fetal alcohol syndrome (FAS), the physician must recognize problems in all three areas:

• Prenatal and/or postnatal growth deficiency


• Central nervous system abnormality


• Facial dysmorphology [clearcut facial signs]

When a child has abnormal findings in only one or two of these areas, coupled with a known or strongly suspected history of prenatal alcohol exposure, the term, fetal alcohol effect (FAE), is often used.

Making the diagnosis of FAS is a major issue in both domestic and international adoptions today. Even under the best of circumstances, it is difficult to recognize FAS in the newborn. Many women who use alcohol also smoke cigarettes or use other substances, whether prescription or illegal drugs. Often there is no way to attribute small size or neonatal behavioral abnormalities to one exposure versus another. The typical facial characteristics of FAS may not be apparent in the baby who is sick or premature or who has distorted features from the delivery itself.

In the older infant or toddler, the difficulty of diagnosis may be compounded by:

Unavailable or unreliable maternal history
Inadequate growth or developmental records.
Alternative explanations for poor growth or development such as institutional living, chronic illness, neglect or abuse.

In international adoption, the issues are further confused by:

• Child descriptions using unfamiliar medical terms or diagnoses


• Poor photographs


• Lack of accurate descriptions of the child's day-to-day behavior


• Agency desire to emphasize the child's most attractive characteristics


• Finally, the older the child gets, the harder it is to document alcohol exposure, past growth or developmental issues and behavioral concerns.

In a recent report of the long-term follow-up of children who met strict criteria for the diagnosis of FAS, low weight tended to correct in adolescence, especially in girls. The facial characteristics lessened and 15% of children could not be recognized as having FAS as teens although the diagnosis had been obvious in early childhood. If FAS could no longer be diagnosed in children who clearly manifested the condition ten years before, how can we expect to make accurate diagnostic decisions about FAS in children who are seen for the first time in adolescence?

Recommendations: Behavioral abnormalities or developmental delay alone are not sufficient evidence to diagnose FAS. In a child where there is suspicion of FAS, efforts should be made to document prenatal alcohol exposure. The most helpful records to assist in the diagnosis are:

• Photographs of the child at different ages (such as school pictures)


• Records of height, weight and head circumference at several different points


• School records over time


• Detailed descriptions of the child's behavior by some one who interacts with the child on a daily basis


• Complete description of any neurological abnormality, such as seizures

Children with FAS do not "get better" over time. Long-term studies of children with FAS emphasized that psychosocial problems such as poor judgment, short attention span, inability to discern social cues, lack of reciprocal friendships, etc. persisted into adult life, even in persons with normal IQ. The educational level attained was seldom above the early elementary school years. Psychosocial difficulties interfered with learning even without mental retardation. Consequently, virtually none of these children were able to live and work independently. Children raised in foster or adoptive homes did not fare any better than those children remaining in birth families.

The children involved in these studies were educated at a time when FAS was not widely recognized and many received inadequate or no special education services. New programs designed to circumvent the specific problems, such as distractibility and impulsivity, that these children face, offer hope for a better outcome. However, the lack of knowledge about FAS is widespread among educators.

Recommendations: Parents and health care providers must make sure that schools have accurate information about the brain damage that accompanies FAS and how to deal with it. Planning for life-long goals should begin at an early age to assure that each child gets the maximum benefit from his school years.

Fetal alcohol effect (FAE) is not a diagnosis The pattern of effects known to be associated with prenatal alcohol exposure is FAS. There is no specific test for FAS. When a child does not show all the features of FAS, it is not known whether alcohol is the cause of the child's problem. Clearly, however, there are some children whose pattern of abnormalities, coupled with a strong maternal history of alcohol use, seem to be a not-quite-full-blown form of FAS. These are the children who often carry the label FAE. There is a strong move among geneticists to abandon the term FAE. They argue that:

• There is no recognized definition for FAE


• Other contributing conditions may be ignored when a child carries this label


• Educators and parental expectations for these children are lowered as they are considered similar to or the same as FAS children


• Mothers are blamed for having produced damaged children.


• Health care providers and educators become frustrated by the broad range of conditions included under this term and their inability to provide a single best program of care


• Overdiagnosis dilutes the efforts spent on children with FAS


• Parents argue that they need this diagnosis to qualify their children for special education services, adoption subsidies, SSI payments, etc.

Recommendations: With the current atmosphere of budget-cutting in both health and education, it behooves parents and social workers to make sure that children labeled as FAS or FAE have careful documentation of their abnormalities. Thus, a child with significant behavioral problems or developmental difficulties should have complete psychological, behavioral and developmental testing results in his records. Armed with these, it should be far easier to justify the need for specialized services even without a "diagnosis" of FAE. Although some programs require a diagnosis from an approved list for eligibility, almost all federally managed programs also allow services to the child who has documented functional abnormality, that is, an inability to complete the developmental tasks of his chronologic age.

There are many resources for parents, physicians and educators caring for children with FAS. A comprehensive list, "Fetal Alcohol Syndrome: Resources and Materials Guide," is available from The Arc at 800-433-525S.

"Fetal alcohol syndrome: The impact on children's ability to learn" is available from the National Health/Education Consortium, (202-822-8405) and is a helpful summary of knowledge, misconceptions and strategies in the education of the child with FAS.

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