Focus on Special Needs...Fetal Alcohol Syndrome

The potentially negative consequences of alcohol abuse during pregnancy have been suspected since biblical times. The relationship between maternal alcohol abuse during pregnancy and developmental birth defects is well-documented in psychological and medical literature. An accurate diagnosis of FAS or Fetal Alcohol Effects (FAE), in which patients display partial effects of the syndrome and evidence many of the same problems as full-blown FAS, must be made by a doctor or geneticist. However, identification of children possibly affected by prenatal alcohol exposure can be carried out by professionals involved in service delivery.

Characteristics of FAS/FAE

Patients with FAS are of short stature, slight build, and have a small head. Typically they are below the third to tenth percentile compared to national norms. A pattern of dysmorphic facial features characterizes these persons as well, and include 1) short eye openings; 2) a short, upturned nose; 3) smooth area between the nose and mouth; and 4) a flat midface and thin upper lip. The facial patterns made FAS patients recognizable although not grossly malformed. In addition, these patients can display other physical anomalies including 1) minor joint and limb abnormalities; 2) cardiac defects; 3) dental anomalies; and 4) vision and hearing problems.

Intellectual Capabilities

A considerable range of intellectual functioning is found among patients with FAS. In a report of twenty cases of varying severity, Ann P. Streissguth and colleagues reported a range of IQ scores from 16 to 105 with a mean IQ of 65. Severity of the syndrome was related to IQ, with the most severely affected children having the lowest IQ scores.

Behavior

There are many behavioral characteristics which differentiate FAS patients from other mentally retarded individuals. Socially, they tend to be very outgoing and socially engaging, yet they are frequently seen by others as intrusive, overly talkative, and generally unaware of social cues and conventions. Poor social judgment and poor socialization skills are common: many patients are hungry for attention, even negative. Due to their social immaturity, they have difficulty establishing friendships, especially with children of the same age. The potential for both social isolation and exploitation of individuals with FAS in very evident. Hyperactivity is frequently cited as a problem for young children who characteristically have short attention spans. Many also have memory problems, thus creating further setbacks to adaptive functioning and academic achievement later on.

NEEDS OF THE PATIENT WITH FAS

Medical Needs

Patients with FAS/FAE typically have complex medical needs associated with their higher than average congenital anomalies. Infants are at risk for central nervous system problems, including a weak suck and feeding and sleeping difficulties as well as failure to thrive. Birth control and sex education for adolescents with FAS are additional areas of medical concern. As adolescents, these children tend to be sexually curious, yet often lack understanding of socially appropriate sexual behavior. Thus, they are at higher than average risk for sexual victimization due to their impulsive behavior and poor social judgment.

Educational Needs

Children with FAS/FAE have special educational needs. Even very young infants can benefit from early stimulation programs to help with intellectual and motor development. These programs are now widely available, with some even offered at home by traveling therapists and educators.

Preschoolers often have a range of developmental and language delays as well as signs of hyperactivity, irritability, and distractibility. Preschool programs which follow individualized educational plans are helpful for the child as well as for the parents who gain valuable respite time to regroup from the intense demands of these children.

Appropriate placement in special education classes beginning in elementary school is often necessary for children with FAS/FAE. A small classroom setting with clear guidelines and a great deal of individual attention can maximize the intellectual capabilities of these learners. Although intensive remedial education has not been show to increase the intellectual capabilities of children with FAS/FAE, it may prevent further deterioration.

Many patients with fetal alcohol syndrome reach an academic plateau in high school. Many will be unable to hold a regular job. Nonetheless, all of these students need to know basic life skills, including money management, safety skills, interpersonal relating, and so forth. These tasks will enrich their adult lives and allow them a degree of independence. The addition of such a life-skills component to the special education curricula for FAS students can be invaluable. Wherever possible and appropriate, vocational training should be part of the high school experience. Unfortunately, most vocational and technical institutes beyond high school will offer a curricula too academically rigorous for developmentally delayed individuals.

Family Needs

Patients with FAS/FAE are at a higher than average risk for physical and sexual abuse and neglect when raised in their families of origin. These children need a supportive, loving home environment with clear guidelines and clear lines of communication in order to develop to their fullest potential. When foster (or adoptive) placement is necessary, the greatest progress is made by calm, low key individuals, who are secure and comfortable with themselves and live stable and predictable lives. Families who treat the FAS child as normally as possible, combining loving acceptance with firm limit setting seem more satisfied than do those who have high performance expectations.

Due to their poor social judgment, underdeveloped independent living skills and impaired intellectual functioning, most FAS children will require a structured, sheltered living situation throughout their lives. The most severely affected may require a completely supervised and sheltered environment. For more functional patients, a group home or halfway house for developmentally disabled adults may be appropriate if continued residents with a family is not possible or desirable.