EDUCATING STUDENTS WITH FETAL ALCOHOL SYNDROME OR FETAL ALCOHOL EFFECTS

Donna M. Burgess, Ph.D.
Area of Special Education

Ann P. Streissguth, Ph.D.
Dept. 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 programs.

Alcohol is 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 system.

Definition 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).

The nature 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.

Fetal alcohol 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:

FAS CHARACTERISTICS

The growth 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.

FAS: DISTINCT PATTERN OF FACIAL FEATURES

• Short palpebral fissures (small eyes relative to space between eyes)
• Long, smooth philtrum (area between nose and lips) -
• Thin upper lip
• 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 facial features.

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.

FAS: INDICATORS OF CNS DYSFUNCTION

• Microcephaly (small head circumference)
• Poor coordination
• Lower average IQ
• Hyperactivity
• Attention problems
• teaming difficulties
• Developmental delays
• 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.

Achievement and Behavioral Characteristics of Students with FAS and FAE

Now recognized 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).

Functional 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.

Individuals 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.

Placement Issues 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.

"Best Practices" for Students with FAS and FAE

Considering 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.

Effective 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.

Education should be culturally relevant.

Although FAS 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 program.

Equally important 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.

Because students 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.

Curricula should 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.

Conclusion

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 population.

School districts 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.

References

Cole, C. K., Jones, M., & Sadofsky, G. (1990). Working with children at risk due to prenatal substance exposure. PRISE Reporter, 2](5), 1-2.

Fiordo, R. (1988). The great learning enterprise of the Four Worlds Developmental Project. Journal of American Indian Education, 27(3), 24-34.

Greer, J.V. (1990). The drug babies. Exceptional Children. 56, 382-84.

Streissguth, 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, 14, 662-669.

Streissguth, 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.

Donna Burgess, 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 and FAE.

Ann Pytkowicz 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.

Reprinted from:

PENNSYLVANIA REPORTER
a product of the Instructional support system of Pennsylvania
Issues in the education of students with disabilities
vol. 22, no. 1 November, 1990
published by PRISE/E-ISC
200 Anderson Road
King of Prussia PA 19406
215/265-7321, 800/441-3215 (in PA)