STUDENTS WITH FETAL ALCOHOL SYNDROME OR FETAL ALCOHOL EFFECTS
Donna M. Burgess, Ph.D.
Ann P. Streissguth, Ph.D.
of Psychiatry and Behavioral Sciences
University of Washington, Seattle, Washington
Due to recent
media attention. we are rapidly becoming aware of a critical threat
to our nation's children-prenatal exposure to drugs and alcohol.
The number of children with physical and mental disabilities caused
by such exposure is increasing so it is imperative that educators
face the reality of serving these children in our schools. A recent
issue of the PRISE reporter (Cole, Jones. and Sadofsky, 1990) addressed
implications of prenatal drug exposure, particularly cocaine, for
education. This article will describe the impact of prenatal alcohol
exposure on children and young adults and make suggestions for educational
used not only by itself, but often in combination with other drugs
(i.e., polydrug exposure). It has been estimated that "as many
as 15% of pregnant mothers report using illegal drugs or alcohol;
experts fear the real rates may be double that" (Greer. 1990).
In an ongoing study in Seattle, Streissguth. Barr, and Sampson (1990)
found that 52% of women had used some alcohol during pregnancy,
and 13% had a pattern involving five or more drinks per occasion
(associated with significantly lower functioning in main and reading
in first grade). Clearly, the number of children affected by alcohol
alone or with other drugs is a significant issue for our educational
of Fetal Alcohol Syndrome and Fetal Alcohol Effects Fetal alcohol
syndrome (FAS) is a medical condition characterized by physical
and behavioral disabilities resulting from heavy exposure to alcohol
before birth. Mothers may not be "alcoholics" in the stereotypic
sense, but usually have abused alcohol during at least part of the
pregnancy. Recent reports also have shown cognitive and behavioral
deficits in children born to "social drinkers" (Streissguth
et al.. 1990).
and extent of damage to the baby depends upon many factors, including
when during pregnancy the woman drank, the pattern of alcohol abuse,
whether other drugs were used, and other biological features of
the fetus and mother. The sooner a woman stops drinking, the better
her baby's outcome. and a mother with one affected child will not
have others with FAS if she does not drink during subsequent pregnancies.
syndrome is determined by a medical diagnosis by a developmental
paediatrician or dysmorphologist (physician specializing in birth
defects). To have the full syndrome, children must have a history
of maternal drinking plus the following:
deficiency usually begins as low birth weight and persists throughout
life, Individuals with FAS typically are quite short and often have
a thin, emaciated look. During puberty, some girls gain weight,
making them look a little chubby, but boys tend to stay slender
well into adolescence. Primary facial features of children with
FAS are noted in the following box.
PATTERN OF FACIAL FEATURES
- Short palpebral
fissures (small eyes relative to space between eyes)
- Long, smooth
philtrum (area between nose and lips) -
- Thin upper
- Flat midface
We may also
see a short nose, small chin. minor abnormalities of the outer ear,
epicanthal folds (folds at the inner corner of the eyes), and other
minor facial anomalies, but these features are not as diagnostic.
FAS is easier to diagnose in children than adults, because many
facial aspects tend to change at puberty. Racial characteristics
also are important to consider in diagnosis since they can modify
The third criterion,
central nervous system dysfunction, perhaps is most important to
educators because it appears as cognitive differences and behavioral
challenges. Here we may see manifestations such as those noted in
the box on the next page. Their educational significance will be
addressed in sections that follow.
OF CNS DYSFUNCTION
(small head circumference)
- Poor coordination
- Lower average
- teaming difficulties
- Motor problems
A child with
a history of prenatal alcohol exposure but not all the physical
or behavioral symptoms of FAS may be categorized as having fetal
alcohol effects (FAE). It should be noted that FAE is not the less
severe form of FAS; rather. a child with FAE does not have all of
the physical abnormalities of FAS. The cognitive and behavioral
characteristics of FAS and FAE are similar. As a group, individuals
with FAE have a higher average IQ, but there is considerable overlap
between the IQ distributions of the two groups. Therefore, FAE can
have equally serious implications for education.
and Behavioral Characteristics of Students with FAS and FAE
as the leading known cause of mental retardation, FAS is diagnosed
in about 1 in 600-700 live births, FAE in about I in 300-350. Such
statistics have striking implications for school programs, and we
can only speculate about the number of children who, for medical
or social reasons, have not been diagnosed. Although FAS and FAE
are considered separate diagnostic categories, for students with
either condition, academic achievement is lower than expected for
other same age youngsters. In one longitudinal study, IQ scores
ranged from 20 to 108, with individuals functioning at intellectual
levels from normal to severely cognitively impaired (Streissguth,
LaDue, & Randels, 1988).
skills (i.e., adaptive behavior) of persons with FAS and FAE often
are severely compromised in relation to both chronological age and
intellectual ability. Parents report that their children function
much more poorly than hoped based on IQ and achievement tests, and
academic and vocational outcomes are often poor.
with FAS and FAE often display a number of inappropriate or "challenging"
behaviors. Teachers' major concerns are the impulsivity poor attention,
and difficulty making transitions demonstrated by young children
with FAS and FAE regardless of level of intelligence. As students
age, their impulsivity becomes restlessness and a tendency to "split"
when situations become too frustrating. Parents and teachers note
such problems as stealing, lying, and inappropriate social interactions.
The greatest problem often is a marked discrepancy between seemingly
high verbal skills and inability to communicate effectively. The
combination of poor self control and inadequate communication skills
creates Teaming and social problems that may leave teachers, parents,
and students feeling frustrated and helpless.
for Students with FAS and FAE Although children and adolescents
with alcohol-related disabilities frequently have debilitating academic
and behavioral deficits, they often remain undetected and unserved
by school programs. Most state educational systems do not recognize
FAS and FAE as distinct handicapping conditions or as a separate
funding category. These students typically are categorized as having
mild, moderate, or severe retardation, or as suffering from an emotional
or behavioral disability. But generic categories do little to define
individual needs or appropriate interventions. When Leachers are
given only broad labels (e.g., learning disabled or emotionally
disturbed), they are left with little information about specific
characteristics and requirements of students with FAS/FAE. Students
must receive appropriate individualized medical, academic, and behavioral
assessment and educational programming.
Practices" for Students with FAS and FAE
the many academic and behavioral demands of students with FAS and
FAE, it is essential that educators define best instructional practices
for this group. Because so little research has addressed pupils
with FAS and FAE, it is difficult to cite data to support panicular
practices. Until such studies are conducted, we have found it necessary
to refer to the literature on effective interventions for students
with similar behaviors and to use clinical experience to recommend
the most promising educational practices.
educational programs target functional skills.
One of the
most debilitating characteristics of FAS and FAE is poor ability
to adapt to demands of surroundings. Educational experiences should
make students as independent as possible, both now and in the future,
with the outcome being adults functioning as fully as they are able.
For some children, "functional" may mean following traditional
academic curricula. Many of our students have been fairly accomplished
in academic subjects. To be independent, they also may need to learn
to ride buses, prepare meals, use money appropriately, and not only
perform a job, but use the social skills necessary to keep it. Educational
goals and objectives should go beyond classroom boundaries and target
skills to be used not only at school, but in homes and communities
as successful. productive citizens.
should be culturally relevant.
and FAE occur in every population in which women drink during pregnancy,
they are more widespread in cultures in which alcohol abuse is prevalent.
Educational programs must consider the cultural origin of children
and prepare them to function in the environments in which they will
live as adults. Some tribes or bands of Native Americans and Alaska
Natives are particularly affected by FAS and FAE. Many Native Americans
believe it essential that education "involve the rediscovery
of traditional Native cultural values that preserve and enhance
life" (Fiordo, 1988). The return to community values should
apply, not only to students in regular education, but to those with
disabilities. Children with FAS and FAE from Native American or
Alaska Native families must have access to the wisdom of their cultures
and opportunities to learn to function within them.
A major focus
of education should be effective communication. Just as there is
a wide range of IQ and achievement among those with FAS and FAE,
so is there also great variability in communication skills. Students
may have apparently normal language or. in the most severely affected,
no verbal communication at all. The majority have some verbal ability,
but their language skills often appear much greater than their actual
ability to communicate effectively. The first step in developing
appropriate, effective communication skills is for teachers to learn
to recognize and honor their students' communicative attempts, because
without effective verbal language, students will (and do) find other
ways to communicate their needs. Facial expressions and body language
are recognized means of expression, but behaviors, even challenging
ones, also can be attempts to communicate. A child with poor verbal
skills may let a teacher know that she needs help by something as
subtle as moving her paper aside or something as dramatic as tearing
it. Recognizing such behaviors as communication and shaping them
into appropriate language is an important part of a comprehensive
is instruction of communication skills. Programs must depart from
traditional models of "speech therapy" or "language
instruction" and view communication as all the verbal, written,
gestural, and behavioral skills that allow an individual to participate
in a social environment. Students with FAS and FAE must be taught
appropriate ways to relate needs to others, whether verbally or
through other communication systems. Communication skills should
be developed in the context of social skills instruction. Because
the two are inseparable and essential sets of skills to live and
work in the community, they should be major components of the educational
process from preschool through high school. Small children can learn
to communicate their needs, interact with peers, and respond to
others appropriately. By high school, students should be Teaming
more complex communication and social skills. such as how to interact
with employers and coworkers, make and maintain friendships, and
behave with friends of the opposite sex.
with FAS and FAE frequently lack the skills to make logical decisions,
they must be taught how to make reasonable choices and given many
opportunities to practice. Such skills may not be within the realm
of typical educational programs, but are critical to the survival
of persons with disabilities in the real world.
be "community-based" and have generalization as the major
outcome. Students with FAS and FAE must have opportunities to practice
new skills in situations in which they will use them (e.g., using
money in a grocery store). Training in the community, or "community-based"
instruction, is particularly appropriate for students with FAS and
FAE. While it is neither practical nor warranted for all educational
experiences to occur outside the school, there must be multiple
opportunities for practice in real settings.
The role of
parent, educator, or any professional involved with a child or adolescent
with FAS or FAE is difficult. Education of youngsters with FAS or
FAE is both an art and a science. Educators must listen and learn
from parents and focus attention on the needs of this very special
can sponsor in-service programs for teachers. specialists, and administrators.
Research efforts must address development and testing of appropriate
instructional and behavioral interventions. Federal funding is required
to facilitate that effort, and parent and professional advocacy
groups must bring this population to the attention of legislators.
Grants from foundations and corporations also should be directed
toward educational and vocational programs.
There is a
long road ahead in meeting the educational needs of students with
FAS and FAE; however, recent developments in technology related
to other handicapping conditions have given educators a promising
start. As information about characteristics of students with alcohol-related
disabilities becomes available, recognition of their unique needs
will lead to better educational programs.
Cole, C. K.,
Jones, M., & Sadofsky, G. (1990). Working with children at risk
due to prenatal substance exposure. PRISE Reporter, 2](5), 1-2.
(1988). The great learning enterprise of the Four Worlds Developmental
Project. Journal of American Indian Education, 27(3), 24-34.
(1990). The drug babies. Exceptional Children. 56, 382-84.
A. P., Barr, H. M., & Sampson, P. D. (1990). Moderate prenatal
alcohol exposure: Effects on child IQ and learning problems at age
7 ½ years. Alcoholism: Clinical and Experimental Research,
A. P., LaDue. R. A., & Randels, S. P. (1988). A manual on adolescents
and adults with fetal alcohol syndrome with special reference to
American Indians. Rockville, Maryland: Indian Health Service.
Ph.D., is a research assistant professor in the Area of Special
Education at the University of Washington. She works extensively
with educators and families of children and adolescents with FAS
Streissguth. Ph.D., is a clinical and developmental psychologist
with 17 years experience in working with patients with FAS and FAE.
She is a professor in the Department of Psychiatry and Behavioral
Sciences at the School of Medicine, University of Washington.
a product of
the Instructional support system of Pennsylvania
in the education of students with disabilities
no. 1 November, 1990
Prussia PA 19406
800/441-3215 (in PA)