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Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment (1996)

Chapter: 8 The Affected Individual: Clinical Presentation, Intervention, and Treatment

« Previous: 7 Prevention of Fetal Alcohol Syndrome
Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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8
The Affected Individual:
Clinical Presentation, Intervention,
and Treatment

Despite the apparently large number of affected individuals who are born each year (see Chapter 5), fetal alcohol syndrome (FAS), alcohol-related birth defects (ARBD), and alcohol-related neurodevelopmental disorder (ARND) are rarely diagnosed. Similarly, although developmental problems in children have been demonstrated through prospective studies to be associated with maternal substance use (Streissguth et al., 1993), these problems are often not acknowledged except in the most extreme cases. Because of the difficulty in identification, as well as environmental factors, learning problems and aberrant behaviors can be attributed to other causes. As a result, many affected individuals do not receive correct diagnosis or treatment for their alcohol-related disabilities.

For obvious reasons, the focus of prevention efforts has been on the prevention of maternal alcohol use in pregnancy or on the prevention of pregnancy itself. The logic has been that such activities will be most cost-effective and, ultimately, have the greatest benefit for both mother and offspring. However, despite our best efforts (see Chapter 7), neither universal prevention nor more targeted activities have had a very strong impact on those persons most at risk (Smith and Coles, 1991), and many children are born affected by their teratogenic exposure. For these children, there has been a curious lack of enthusiasm for targeted efforts directed at the prevention of secondary disabilities. Such efforts might prevent some of the more negative outcomes reported to be associated with FAS (Dorris, 1989; Lemoine and Lemoine, 1992; Spohr et al., 1993).

Originally, it was not clear which factors produced these poor developmental outcomes—whether, that is, the observed problems resulted from damage to the nervous system or from poor caregiving. However, there are now convergent

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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data from long-term clinical studies of individuals with FAS gathered from a number of different populations (Lemoine and Lemoine, 1992 [France]; Steinhausen et al., 1993 [Germany]; Streissguth et al., 1991 [Native American]) arguing that outcome can be predicted most effectively by examining the interaction between severity of biological insult (operationally defined as dysmorphia) and environmental risk (operationally defined as caregiving instability and abuse or neglect). This relationship comes as no surprise, because it is well known that in other studies of high-risk children, poor social and caregiving environments exacerbate negative outcomes, whereas middle-class social status (Aylward, 1992) and well-designed early intervention (Bryant and Ramey, 1987) ameliorate these negative effects. However, few systematic attempts have been made to intervene with alcohol-affected children to test the possibility that such strategies would be effective in producing more positive outcomes.

It is possible to speculate on reasons for the lack of interest in intervention with this group of children (see Coles and Platzman, 1992). Many of those identified as alcohol-affected are of minority or low socioeconomic status (SES) (Abel, 1995). For these reasons, families often lack the resources that are required to access appropriate services (Anderson and Novick, 1992). It is also well known that most medical and other professionals are not comfortable dealing with substance abuse or with addicts (Chappel, 1973; Robinson and Podnos, 1966). In addition, however, there has been an attitude that ''the damage is done" and that, given the biological nature of the insult to the nervous system, there is little to be done to help affected children. Some clinical studies have appeared to suggest that an optimal rearing environment may not significantly alter the deficits observed in children with FAS (Streissguth et al., 1985). However, others have argued that postnatal environment and experience do, indeed, significantly influence outcome in terms of both behavioral and cognitive development (Brown et al., 1991; Smith and Coles, 1991). Although there are few clinical studies in affected children, animal research suggests that the postnatal rearing environment may have positive outcomes even in alcoholized animals (Hannigan et al., 1993; Weinberg et al., in press). Although one cannot extrapolate directly from findings in animals to the clinical setting, the present data certainly indicate one possible direction for future research on treatment of children exposed to alcohol prenatally.

When considered, the view that intervention may not be useful in children affected by alcohol seems odd, because it is inconsistent with the attitude taken toward other groups of high-risk and disabled children, who are the focus of many early intervention and special education efforts (Meisels and Shonkoff, 1990). Children with Down syndrome, for instance, usually are more seriously affected than those with FAS. Nevertheless, such children are regularly identified early and placed in intervention (Farran, 1990), although their developmental scores during the first year often do not qualify them for services.

There appear to be several kinds of barriers that have prevented alcohol-affected

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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children from receiving appropriate intervention and treatment services. These problems may include the following: (1) The characteristics of the children themselves have not been well understood, so it has been difficult to understand how to intervene. (2) The nature of the insult to the developing child is such that, often, these children do not qualify for existing services. (3) Some services that might benefit mothers and children do not exist or are not widely available. (4) It is difficult for most professionals to deal with substance abuse due to lack of training, denial, and other social or emotional reactions. (5) There are many barriers to the interaction of the systems that serve children and those that serve recovering mothers so that the needs of the family often are overlooked (Coles and Platzman, 1992). These issues are explored in this chapter. The chapter begins with a description of clinical issues, including a description of what is currently know about the medical, behavioral, and social problems documented in people with FAS. These are discussed in a chronologic manner, beginning with infancy, in which most information has been gathered, and ending in adulthood, a period for which little information is available. Key questions about these issues that are relevant for planning interventions are described. The chapter then goes on to discuss what is known about interventions (medical, educational, and family-oriented initiatives) and the possibilities for decreasing secondary disabilities. The chapter concludes with a discussion on the limitations and barriers to the provision of services to people with FAS.

CLINICAL ISSUES IN INDIVIDUALS WITH FAS, ARBD, OR ARND

Medical Overview: FAS Health Issues

In general, children with fetal alcohol syndrome require little more than routine medical care. However, a number of physical problems have been reported to be related to alcohol exposure and should be considered specifically. These include cardiac defects, urogenital problems, skeletal abnormalities (Streissguth et al., 1985), visual problems (Stromland, 1981), hearing deficiencies (Church and Gerkin, 1988), and dental abnormalities (Barnett and Schusterman, 1985). Necessary attention to these problems varies with the age of the child.

In infancy, children with fetal alcohol syndrome should be carefully examined for associated major malformations. Associated defects of the heart and skeletal system can be excluded through a careful physical exam. Problems of the urogenital system, including hydronephrosis and kidney anomalies, cannot be excluded without imaging studies. Because no accurate frequencies for renal anomalies in FAS are established, it is not clear if routine ultrasound evaluations of the renal system are cost-effective in asymptomatic patients. Certainly, renal evaluations are warranted after any urinary tract infection or when other major malformations are found.

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Because growth deficiency is part of FAS, a common medical dilemma remains excluding treatable causes for failure to thrive. There is no standard approach to this problem available in the literature. Children with FAS who are raised in nonabusive and nonneglectful settings and are given appropriate nutrition tend to grow parallel to normal growth curves for length, weight, and head circumference. Therefore, postnatal growth decelerations away from the normal growth curves should not be discounted as simply part of the syndrome. Most frequently, growth deceleration will be due to nutritional insufficiency from poor suck, a lack of interest in feeding, or caregiver neglect. When these problems are excluded and the physical examination does not suggest a specific focus for evaluation, consideration of all the usual reasons for failure to thrive, including problems of infections, absorption, metabolism, tumor, and structure, should be undertaken. Deceleration in the rate of head growth, with or without deceleration in other growth parameters, is very unusual in fetal alcohol syndrome and warrants consideration of brain imaging studies.

Finally, it is important to mention that alcohol exposure can occur in gestations already complicated by chromosomal anomalies or other birth defect syndromes. General syndrome assessment and testing should always be considered in dysmorphic infants who were exposed to alcohol with an "atypical" fetal alcohol syndrome presentation.

Children with fetal alcohol syndrome are reported to have high rates of visual and hearing problems. Visual acuity may be compromised by the short distance from the lens to the retina (small optic globes) or the shape of the lens. Although retinal anomalies may be found, progressive retinal dysfunction has not been reported. Increased frequencies of both conductive and neurosensory hearing problems are found in children with FAS. The frequency of these difficulties and the ages at which they are most likely to become a problem are not fully established. Routine visual screening prior to school and every two years thereafter would appear to be adequate. Similarly, brain stem auditory evoked response (BAER) testing between 6 and 12 months may be of some use in early identification of hearing loss. However, a history of recurrent otitis media or delays in speech should also alert the clinician to the possibility of hearing loss. The efficiency of hearing screening beyond that routinely offered in schools in asymptomatic patients with FAS has not yet established.

Children with FAS frequently have narrow maxillary dental arches and often have Class III occlusion with final mandibular growth. Orthodontic follow-up through middle childhood and transitional dentition may lead to selected dental extractions or other techniques that could prevent more extensive orthodontia or oral surgery.

Severe neurologic problems in FAS are relatively rare. Occasionally, late gestational exposure to alcohol is thought to be a cause of spasticity. Abnormalities in EEGs (electroencephalograms) have been reported in infancy; the rate of seizures is not known, but the possibility of seizures needs to be considered and

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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excluded in patients with histories suggestive of petit mal, absence, or psychomotor seizure forms. Children with FAS appear to go through puberty normally and at the normal age. While there do not appear to be medical problems associated with puberty resulting from prenatal exposure, those young people who are cognitively impaired are at higher risk at this time due to intellectual limitations and impaired judgment. They may also be living in high risk environments.

Finally, it is possible that children with FAS may carry a genetic predilection for alcoholism that can become manifest in adolescence with drug and alcohol experimentation. Early warning and modeling of alcohol avoidance may be helpful, and careful observation of behavior in adolescents is strongly advised.

Behavioral and Social Issues
Research Methodology

In understanding how to meet the needs of individuals with FAS, it is first necessary to describe the behavioral characteristics of affected children as well as the social environment in which many affected children live. Information about affected children is derived mainly from two sources: (1) retrospective and clinical studies of clinically referred children with FAS and fetal alcohol effects, and (2) prospective research studies of children exposed to alcohol in utero due to maternal drinking. In most such prospective research studies, maternal drinking is in the light to moderate range, with only a few women drinking in the heavy range. As a result, most of the children in these prospective studies are not dysmorphic and would not, therefore, qualify for a diagnosis of FAS, although in some cases they may have milder effects that are observable through focused testing or the statistical analysis of group data.

It is well known that these different methodologies often produce different kinds of data and may, if a reader is incautious, suggest different conclusions. (These studies and their outcomes have been reviewed extensively elsewhere and the interested reader is directed to Coles, 1992; Coles and Platzman, 1993; Russell, 1991; and Streissguth, 1986.) In retrospective studies, there is usually much stronger evidence for the effect of a teratogen than in prospective studies, due to the systematic selection biases that occur when children are referred for special education or medical treatment. However, without statistical and experimental controls, it is difficult to discriminate the effects of the teratogen from that of other, associated factors. Despite these limitations, retrospective clinical studies are of great value because the characteristics of the affected individual can be observed much more clearly than among more moderately exposed children. In addition, the characteristics of clinically affected children include those problems that will require intervention and treatment.

In contrast, prospective studies allow some statistical control of confounding variables, as well as the use of contrast groups to control for factors such as social

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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class and race, and also allow examination of factors that can be obscured in clinical studies. However, as described above the sample selected for inclusion in prospective studies is often different from that included in retrospective and clinical studies. The level of prenatal alcohol exposure tends to be less than that found in retrospective studies of identified FAS individuals. This can lead to problems in interpretation of the findings. In interpreting the results of such studies, the problems of overgeneralization and interpretation of multiple comparisons should be considered. For these reasons, in the current review, the type of study from which the information is derived is identified.

Developmental Differences in Clinical Presentation

Children with the full FAS syndrome are distinguished by dysmorphic facial features, growth retardation, and some evidence of damage to the central nervous system (CNS). On average, individuals with the full syndrome are mildly mentally retarded, with IQ scores in the 60s (Streissguth, 1986). However, there is wide variability in presentation, and scores can range from the severely disabled through the average range (85 to 115). Individuals with partial FAS, ARBD, or ARND may have some of the characteristic physical features, while others are absent, or they may have behavioral effects in the absence of physical features. These individuals often have IQs in the "borderline" range (i.e., 70 to 85), and are frequently described in the scientific literature and popular press as having "normal" intelligence. In fact, having intellectual abilities in this range can be very disabling socially and adaptively, particularly if accompanied by the other kinds of problems often found in children growing up in alcoholic families (Brown, 1991; Sher, 1991).

Behavioral deficits have been described by many clinicians. A number of problems have been identified, including (1) attentional problems or hyperactivity (Morse, 1991; Nanson and Hiscock, 1990); (2) academic problems, including specific deficits in mathematics and memory skills (Streissguth et al., 1993); (3) very specific language deficits (Abkarian, 1992); and (4) problems with adaptive functioning that grow more significant with age (Lemoine and Lemoine, 1992; Streissguth and Randels, 1989). Although it is possible to have only one or two behavioral difficulties, in most individuals with a diagnosis of FAS, most of these problems co-occur, which makes an appropriate intervention program hard to implement.

While such patterns are often reported to be characteristic of affected individuals, they are not always seen. Even some dysmorphic children do not show all of these traits (Coles et al., 1994a,b), and in prospectively followed samples of moderately exposed children, few such problems may be seen (N. Day, personal communication, 1994; Greene et al., 1991; Boyd et al., 1991). Although a teratogenic etiology for these patterns is usually assumed, the relationship between

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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specific neurological damage and particular behaviors or patterns of behavioral development has not been well established (see below).

Finally, because of the nature of the developmental process, the behavioral, as well as the physical, manifestations of the teratogenic effect can change over time. Such apparent inconsistencies make diagnosis and treatment difficult and often lead observers to suggest that effects are unrelated to prenatal exposure. However, a better understanding of the meaning of the presentation of behavioral symptoms may also provide a key to their nature.

Newborn and Infancy Although it would be best to identify affected individuals as early as possible, it is frequently difficult in the newborn period because of the lack of development of specific facial features that are often thought to be more recognizable during the preschool period (Clarren et al., 1987; Egeland et al., submitted for publication; Graham et al., 1988). It has been established (Abel et al., 1993; Coles et al., submitted for publication) that trained observers can identify both the facial features and the behavioral signs associated with prenatal alcohol exposure during this period.

Behavioral patterns characteristic of alcohol-exposed neonates are often those associated with withdrawal from a CNS depressant (Coles et al., 1984, 1985; Nugent et al., 1990; Robe et al., 1981). During the first week of life, infants exposed to sufficiently high amounts of alcohol throughout pregnancy may show excessive arousal, disturbed sleep patterns (Sher et al., 1988), hyperactive reflexes, gastrointestinal symptoms, and other signs of abstinence syndrome. Children who were exposed only during the first part of pregnancy (Coles et al., 1985) or to lower doses (Richardson et al., 1989) may not demonstrate behavioral changes. Behavioral effects, including overarousal and sleep disturbances, may persist over the first month of life (Coles et al., 1987) or longer (Havlicek et al., 1977; Ioffe and Chernick, 1990). Other studies have identified specific behavioral differences in neonates (e.g., habituation deficits relative to controls [Streissguth et al., 1983]; effects on the cry acoustics [Nugent et al., 1990]). (See Coles and Platzman, 1993, for an exhaustive review of effects in infancy and childhood.)

Fewer studies have examined effects in the first two years of life and, often, there have been no effects demonstrated, particularly in samples of children without the full syndrome (e.g., Richardson et al., in press; Streissguth et al., 1980). Growth measures, the metrics of which are more direct and precise than those of behavior, have been found to withstand statistical manipulations sufficiently to allow identification of effects of moderate exposure (Day et al., 1994). Behavior, however, is more slippery to measure and more poorly defined in relation to teratogenic exposure. For that reason, at least, in part only children who are clearly affected (i.e., dysmorphic or growth retarded) or those who are participating in well-controlled prospective studies (Jacobson et al., 1993) have shown effects on global developmental tests during this period.

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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In contrast, when FAS is identified as clinically significant in infancy and babies are followed medically, there are a number of characteristic problems associated with fetal alcohol exposure, including failure to thrive (often associated with feeding difficulties), delays in development, motor dysfunction, otitis media, and cardiac problems. Behaviorally, infants are often described as having what Greenspan and Wieder (1993) call "regulatory" problems, as well as delays in acquisition of skills. Unfortunately, clinically referred children are often victims of abuse and neglect as well as prenatal exposure and, for that reason, may also suffer from behavioral problems associated with those conditions (e.g., reactive attachment disorder [American Psychiatric Association, 1994] or the behavioral effects of stress), and it can be difficult to discriminate one behavioral effect from another, particularly among individual children in a clinical setting (Zeanah et al., 1993).

Preschool During the preschool period, usually defined as from 2½ to 6 years of age, there are relatively few studies of prospectively followed alcohol-exposed children. Those that have been done are not entirely consistent in their findings across most areas studied, including cognition (Greene et al., 1990; Streissguth et al., 1989), attention (Boyd et al., 1991; Brown et al., 1991; Streissguth et al., 1984), and behavior (Brown et al., 1991; Landesman-Dwyer et al., 1981; Morrow-Tlucak and Ernhart, 1987).

In clinically identified groups, presentation varies, depending on the child's caregiving environment, as well as other factors. However, cognitive deficits are observed frequently, and attention-deficit hyperactivity disorder (ADHD) is often identified (Conry, 1990; Nanson and Hiscock, 1990). Children of this age have been described both as lively, friendly, and socially interested (Streissguth and Giunta, 1988) and also as exhibiting hyperactivity, ADHD, language dysfunction, perceptual problems, and behavioral disturbances (Morse, 1991). Morse et al. (1995) also reported on the frequency of sensory integration problems in a study of a 100 children with FAS and an equal number of controls, finding that parents of children with FAS reported more problems than other parents.

Language Development. The possibility that there are deficits in language development as a result of prenatal alcohol exposure has been examined, particularly in young children. In children with cognitive deficits, language delays are often noted before other problems and are usually associated with general developmental delay. Of more interest is the possibility that specific language deficits are associated with alcohol exposure. Again, this possibility has been explored both by the examination of children with the diagnosis of FAS and those who clearly have alcohol-related disabilities and by prospective examination of exposed children through identification of maternal drinking prenatally.

In a comprehensive statistical analysis of the first seven years of data from the prospectively followed Seattle sample, Streissguth et al. (1993) concluded

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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that "language disabilities are generally absent from the lists of fetal alcohol effects revealed by these analyses" (p. 198). However, they noted that in clinically referred samples, young children had "good but superficial language skills" that masked the "early neuromotor deficits that foreshadow later school problems" (p. 198). Similarly, a prospective study (Greene et al., 1990) in Cleveland that specifically explored language development in children aged 4 years, 10 months, using both observation and standardized tests, found no evidence of deficits in the exposed groups in comparison with other low-income children.

In a cohort of low-income African-American children in Atlanta, Coles and colleagues also found that language skills were preserved relative to visual or spatial skills and memory (Coles et al., 1991a, 1994a,b). In these studies, language was assessed only as part of a cognitive battery and was confined to measures of vocabulary and fluency, so more subtle deficiencies in language skills may not have been detected.

In another sample, however, Russell et al. (1991) looked at 6 year olds whose middle-class mothers had been identified during gestation as "heavy" drinkers. Among social and moderate drinkers, no significant effects were found on tests of intelligence or on auditory information processing. However, among children of "problem" drinkers (defined from the results of a screening test called Indications of Problem Drinking), scores on the verbal portion of the Weschler Intelligence Scale for Children-Revised (WISC-R), the Token Test (a receptive language measure), and a dichotic listening task were significantly lower than in other groups.

When descriptions of clinical samples of alcohol-affected children's language problems are examined, there is an apparent discrepancy between the child's vocabulary and fluency and the general ability to communicate effectively. Difficulties appear to involve comprehension and social discourse or the pragmatics of speech. These issues were examined by Abkarian (1992), who reviewed the available literature on speech and language disabilities in alcohol-affected children. He concluded that affected children had deficits in the quality of semantics and syntax and in the pragmatic aspects of speech. For instance, although they easily engaged in conversational interactions and understood the need for turn taking, their responses often had little relationship to the initial statements (Hamilton, 1981). In dysmorphic children (Becker et al., 1990), there were indications of articulation deficits associated with structural as well as functional defects.

Abkarian (1992) found that in comparing the experimental and the clinical literature on FAS and alcohol effects, a pattern of communication dysfunction could be identified. This is described as "social but dysfunctional communicative interaction" (p. 232), with individuals being fluid, but superficial, in their speech and having an awareness of the necessity for turn taking without the ability to communicate effectively. Because there are a number of potential reasons for such deficits, the author concludes with a plea for treatment research

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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both to describe the nature and extent of any alcohol-related speech and language problems and to identify appropriate methodologies for intervention. Such studies have not yet been done.

School Age School age covers that time from the beginning of school (usually 6 years of age) until early adolescence (13 years). At this age, clinically referred, affected children are described as unable to sit still in class and pay attention to school work. They are said to find it difficult to deal with multiple sensory inputs, particularly auditory information, and to show significant difficulties in peer relationships (Morse, 1991; Streissguth et al., 1985). Beginning at school age, children have also been reported to "lack remorse," to fail to learn from mistakes, to lack judgment, to be unusually aggressive, and to be unable to maintain friendships (Streissguth, 1992).

Despite the importance of this period of children's academic and intellectual development and socialization, there are few empirical studies of the effects of prenatal alcohol exposure during this time. Those controlled research studies that do exist have focused on cognitive performance, academic achievement, and attention or hyperactivity. There is no research-based information available on social and emotional status or other aspects of development in these children.

Cognitive and Academic Performance. In prospective studies it is at school age that deficits in cognitive performance begin to appear reliably (Coles et al., 1991a; Nanson and Hiscock, 1990), and these have been found even in the absence of physical dysmorphia (Day, personal communication, February 1995; Streissguth et al., 1990).

Streissguth and her colleagues reported that at age 7, cognitive effects, including lower IQ scores on the WISC-R, were associated with heavier drinking during pregnancy in a sample of middle-class, predominantly Caucasian children (Streissguth et al., 1990). In understanding these data, it is important to note that the vast majority of the exposed children were performing in the average range and would not have been identified as showing clinical symptoms. Areas of relative weakness included memory, problem solving, mental flexibility, visual or motor performance, academic skills (measured with the Wide Range Achievement Test [WRAT]), and particularly math skills. These authors also noted that such deficits were more evident under more stressful environmental conditions (e.g., in single-parent families, in large families, and in lower-SES groups). Due to the large sample size, these investigators were able to control most potentially confounding factors.

Similar outcomes were found in a low-SES predominantly African-American sample in Atlanta (Coles et al., 1991a). More impaired performance on the Kaufman-Assessment Battery for Children (K-ABC) was found in children with greater exposure to alcohol. Sequential processing and preacademic skills, particularly

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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precursors to math, were most affected, with language relatively preserved.

Attention. Considerable confusion continues to exist over "attention" as a psychological construct and "attention" as a component of attention-deficit hyperactivity disorder. The latter is defined in the fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual (DSM-IV) as a constellation of behaviors reported by parents or teachers, and it represents one of the most common problems of childhood. In contrast, attention as the psychological construct is measured by using a variety of tests (e.g., continuous performance [CPT] or vigilance tasks). Children with ADHD do not necessarily exhibit problems in attention, the psychological construct (see Shaywitz et al., 1994, for more extensive discussion of this issue). Although clinicians frequently report disturbances in attention in the offspring of alcoholic women, results from the few systematic studies that address attention in FAS have been difficult to interpret. Thus, Streissguth et al. (1986) found that greater fetal alcohol exposure was associated with poorer test performance on a vigilance task, particularly greater distractibility and more impulsivity. Academic and behavioral deficits consistent with a diagnosis of ADHD were noted in the same children.

A sample from the Atlanta cohort was tested at age 5 years, 10 months (Brown et al., 1991), and a second group of children was tested at 7 ½ years (Coles et al., 1994a,b), by using two different vigilance paradigms. At 7 ½ years, a contrast group of children with a confirmed diagnosis of ADHD, who responded therapeutically to stimulant medication, was also tested. At 5 years, 10 months, children whose mothers continued to drink throughout pregnancy showed a relative weakness in sustaining attention across trials but did not demonstrate impulsivity. Hyperactivity and impulsivity were also assessed through standard checklists, videotaped observations, and cognitive measures, and no other ADHD-type effects were noted on any of these measures. At 7 ½ years, when a more comprehensive assessment of vigilance performance was possible, children with FAS showed better performance on these computerized tasks than did non-alcohol-exposed ("normal") children, while the ADHD-diagnosed children were significantly impaired. Based also on standard checklists and observation of behavior, children with an ADHD diagnosis could be discriminated but children with alcohol exposure were no different from controls.

Similarly, Fried et al. (1992) reported that alcohol exposure (among middle-class, white, social drinkers in Ottawa) resulted in lower levels of impulsivity on a standard CPT task, a finding that is consistent with those in the Atlanta sample but inconsistent with those of Streissguth et al. (1986) and Nanson and Hiscock (1990), who used a group of clinically referred, Native American children in Canada. With a sample of lower-class white and African-American children in Cleveland, Boyd et al. (1991) found no effects of alcohol exposure on attention at age 4 years, 10 months.

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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There are few studies of older school-aged children who have been exposed to alcohol. In the only prospective study of mild to moderately exposed children without dysmorphia who were followed into later childhood, Olson et al. (1992) obtained teacher ratings and academic scores for the Seattle sample at age 11. They found that measures of ''binge" drinking (more than five drinks per occasion) during pregnancy were most highly related to later academic difficulties. These children were described by teachers as distractible, restless, and lacking in persistence in contrast to other children in the sample. They were also identified as having problems with processing and reasoning. The authors caution that while similar problems were noted in this cohort of children at 7 years, there were differences in the pattern of deficits from one age to the next. In addition, in this normally functioning cohort, the social problems that were observed at this time were not related to prenatal exposure. Therefore, the impact of prenatal alcohol exposure on school-age children remains to be clarified.

Adolescence In clinical populations, adolescents with FAS are considered to have significant deficits in intelligence, learning, academic achievement, and—more particularly—in social behavior (LaDue et al., 1989; Spohr et al., 1993). In addition, there are grounds for concern that these youth are at much greater risk for substance abuse than others of this age due to familial exposure and potential effects of their prenatal exposure.

Although the description of school-aged children with FAS is often very negative, adolescents are described in more negative terms still (Dorris, 1989). In a follow-up of German adolescents with FAS and the so-called fetal alcohol effects (FAE), Spohr et al. (1993) identified persistent developmental and psychiatric problems, and described the children's prognosis as "gloomy." Correlations with behavioral outcomes suggested that facial dysmorphia was a strong predictor of persistent pathology. The researchers also noted that in almost all cases, clinically referred children's caregiving environments were "highly disorganized." Lemoine and Lemoine (1992) reported similar outcomes in a 20-year follow-up in France.

Streissguth and colleagues (Streissguth et al., 1991; Streissguth and Randels, 1989) have followed a number of clinically referred individuals, diagnosed as FAS and the so-called fetal alcohol effects, and reported on outcomes in adolescence and young adulthood. Intellectual deficits persisted, as did some dysmorphic features. Puberty was delayed in some males and was associated with weight gain in females. Very poor social outcomes were observed in these affected individuals, with adaptive behavior and social judgment impaired to a greater extent than intellectual functioning. Dysfunctional environments were common (see below). In this sample, as in others, alcohol and other substance abuse was often reported, raising a concern that this group may be at higher risk for such outcomes.

Streissguth and colleagues also have reported on the performance of a large

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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prospectively followed cohort of 14 year olds whose mothers drank moderately during pregnancy. They evaluated attention and short-term memory (Streissguth et al., 1994a), as well as academic performance (Streissguth et al., 1994b), among these clinically normal, middle-class, young people. In examining attention and short-term memory, a number of measures were used, with selection based on the theories of Mirsky (1989). A measure of maternal "binge" drinking—Average Drinks per Occasion, Prepregnancy Recognition—was the best predictor of the child's performance at age 14. Of the 52 outcome measures used, CPT vigilance performance (variable response rate and impulsive responding), Talland letter cancellation (total correct and false alarms), and number of trials on a computerized "stepping stone" maze were most highly related to prenatal exposure.

When two measures of academic ability were evaluated in this same cohort (the Arithmetic Subtest of the WISC-R and the Word Attack Subtest of the Woodcock Reading Mastery Test), there was a significant relationship between academic problems (e.g., "word attack skills" and mathematics problems) and prenatal alcohol exposure in what the authors described as a "dose-dependent" manner. The authors also report a strong correlation between 7-year-old and 14-year-old math performance, particularly among those children showing early deficits whose mothers reported heavy drinking during pregnancy.

Adulthood With the exception of the clinical studies by Streissguth et al. (1991) and Lemoine and Lemoine (1992) cited above, there are no systematic studies of adults with FAS. Thus, there is no information about longevity, sexuality, parenting, vulnerability to disease or mental illness, or other data that would be valuable in planning for these individuals. Anecdotal information suggests that the prognosis is poor and includes a higher risk for substance abuse, criminal behavior, deteriorating mental health, and similar problems. However, it is unwise to generalize from such fragmentary information.

Key Questions for Planning Interventions

For the clinician, as well as the research scientist, there are several important questions that must be answered in order to plan interventions with individuals with FAS, partial FAS, and ARND:

1.

Patterns of development: Are there discernible developmental patterns among these individuals, so that children can be identified and their development and behavior predicted?

2.

Etiology: Are the behaviors seen in alcohol-exposed children with alcohol effects the result of prenatal exposure to the teratogen (and thus the result of specific or generalized brain damage); are these behaviors typical of children who have been the victims of abuse and neglect (and thus the result of attachment

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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disorder, dysfunctional families, and other social problems); or are the behaviors a result of an interaction between brain structure and later experiences?

3.

Specificity: Are the behavioral deficits reported in alcohol-exposed children specific to FAS and ARND or are they simply secondary to mental retardation or borderline intelligence? If the behaviors seen in children with FAS are no different from the behaviors usually seen in others with mild mental retardation, then no special educational or intervention efforts may be warranted.

Patterns of Development

The first question is whether there are discernible patterns in the development of prenatally exposed children. A review of existing information about the development of these children suggests the following conclusions:

1.

The data base is limited: Conclusions about individuals with FAS, ARBD, and ARND are based on a relatively few studies. Although there are hundreds of experimental studies (particularly animal models), the information available from well-conducted clinical studies and prospective studies is very limited. The research paradigms that are required to investigate the effects of prenatal exposure are very difficult to carry out. Working with clinical populations involves difficulties with regard to prenatal exposure to substances of abuse, the clinical populations can be difficult to work with and there are multiple confounding factors. Similarly, the use of longitudinal samples, which provide a rich data base, also has some technical difficulties. It is very labor intensive and financially expensive to carry out such studies. Problems can arise with selective attrition of subjects from the sample and with interpretation of the repeated assessments that are usually done with the sample. Because these samples are so difficult to identify and follow over time, individuals may be assessed repeatedly with various psychometric instruments, so that the results are subject to possible error due to multiple comparisons. In addition, even when an effect is repeatedly found within the same sample, it is necessary to cross-validate the experiment with a different group to confirm that the outcomes are not a function of the particular sample under study rather than of the "population" of affected individuals in general.

2.

There is a great deal of variability in outcome: For this reason, it is difficult to generalize about the child with FAS or the alcohol-exposed individual who shows few or less distinct physical signs but is suspected of having behavioral effects (ARND). In some cases, individuals with FAS can be identified during infancy because they show significant deficits early and persistently. More mildly affected individuals have a much more variable developmental course, and it may be difficult to fully discriminate outcomes associated with teratogenic exposure from the effects of other environmental factors in such cases. Finally, many individuals are unaffected by any reasonable criteria.

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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In addition, because research has been limited, as well as confounded by difficult-to-control environmental factors, firm conclusions about behaviors associated with fetal alcohol exposure are premature.

3.

Early identification is possible in some cases: Identification is possible in the neonatal period (Abel et al., 1993), particularly in the severely affected child with obvious physical effects and in infants who show behaviors associated with withdrawal.

4.

Effects of prenatal exposure appear to become more significant later in the child's development, perhaps due to the nature of a disorder that may affect behaviors associated with more mature social functioning.

Effects may be mild during infancy, and many affected children may not meet the criteria for early intervention programs during this time (Coles and Platzman, 1992; Streissguth et al., 1993). This situation may occur for several reasons, including (1) the nature of cognitive and motor development; (2) limitations in measurement of cognitive processes during this time; (3) cumulative effects of the interaction of the biological insult and nonoptimal environments; and (4) the type of neurological damage associated with prenatal alcohol exposure. These possibilities should receive more research attention.

Preschool children with FAS may appear to be friendly and social and to have adequate language skills despite (sometimes) significant cognitive and motor deficits. Among mildly exposed children who have been followed prospectively, language skills appear to be preserved relative to visual or spatial skills, but there are significant (and very specific) deficits in communicative skills in the more affected children who qualify for a clinical diagnosis (Abkarian, 1992).

Cognitive and academic problems are manifest at early school age and appear to involve specific deficits in math skills, some visual or spatial skills, and sequential processing. At this time, in clinical samples, an increase in behavior problems is also reported. These deficits can be identified as early as 5 to 7 years of age with appropriate testing.

Behavioral and social problems appear to worsen with age even in the more mildly affected children. In clinically referred samples, adaptive behavior is not consistent with intellectual ability (Streissguth and Randels, 1989).

Attentional disorders have been widely reported in clinical samples. In empirical studies, there has been very mixed support for this association. Clearly, this is an issue that should receive more research attention, given the potential for misdiagnosis and inappropriate treatment.

In adolescence, affected individuals are reported to have unique neurocognitive and social problems, although most such conclusions have been based on case reports and clinical studies. In addition, alcohol-affected children and adolescents are often identified in minority populations (Coles et al., 1991a; LaDue et al. 1989; Nanson and Hiscock, 1990) and in clinically referred samples (Streissguth et al., 1991), making it difficult to determine whether observed behavior

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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problems result from prenatal alcohol exposure, associated factors such as SES, family dysfunction, and substance abuse, or are secondary effects of mental retardation. Because systematic studies are so rare, there is an even greater need for more empirical research about older children, adolescents, and adults with this disorder than for younger individuals.

Etiology

The second significant question is whether developmental problems seen in alcohol-exposed children should be attributed solely to the effects of the teratogen on neurological functioning, solely to the effects of environmental factors such as social class and dysfunctional families, or to some combination of the two.

At present, there is no easy answer to this question. Although it is logical to assume that outcomes result from interaction between the child's biological status and the caregiving environment, such a statement is too general to provide meaningful guidelines for intervention and treatment.

Neurobiological Markers of Prenatal Alcohol Exposure Animal studies as well as clinical reports support the belief that prenatal exposure to alcohol affects both the structure and the function of the brain. Support for this view comes from neuropathological studies as well as from more recent reports using newer imaging methods (Clarren, 1986; Mattson et al., 1992; Swayze et al., in press). Together, these reports indicate abnormalities affecting a number of brain regions in many, but not all, affected individuals (see Chapter 4 for a review of this material).

Several investigators have begun to examine the possibility that children with FAS show a similar pattern of deficits to those who have frontal lobe damage (Damasio et al., 1994; Mateer and Williams, 1991; Shallice and Burgess, 1991). Specifically, those persons with FAS show impaired judgment, lability, poor impulse control, and deficits in social and adaptive functioning similar to the kinds of problems seen in patients who have frontal lobe injuries as well as similar learning problems (Santoro and Spiers, 1994).

Most of these data on children with FAS have not yet been published and have been made available only through personal communication (J. Male, July 1994) and presentations at professional meetings (Clarren et al., 1994; Coles et al., 1994a,b; Kodituwakku et al., 1994; Kopera-Frye et al., 1994). However, these few studies present convergent data that strongly suggest that investigation of this area of functioning could provide a useful model for understanding the deficits seen in individuals with alcohol effects.

Environmental Factors Associated with Prenatal Alcohol Exposure Having briefly described the characteristics often seen in individuals with FAS and

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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ARND, and having discussed evidence suggesting that neurological damage may account for the associated behavior, it is now necessary to review some environmental factors that must be taken into account in planning intervention and treatment. Because children, including alcohol-affected children, develop within a family and a community, their caregiving environment must be given careful consideration as well. However, although it is widely assumed that the caregiving environments of many individuals with FAS are nonoptimal, the social and environmental factors that may affect their development have not been adequately investigated. Rather, most research efforts have focused on the specific teratogenic effects of the prenatal alcohol exposure (see Streissguth et al., 1993) and have treated environmental factors as "confounders." Because such factors may significantly impact alcohol-affected children either independently or interactively, it will be necessary to investigate these issues as well, despite the real difficulty in doing so.

Alcohol abuse and dependence affect the parents' ability to function adequately in many areas (Famularo et al., 1992). Problems often begin during the prenatal period with poor maternal health and inadequate prenatal care (see above) and continue after the birth of the child. For the alcohol-exposed child, as well as all other children, the postnatal rearing environment is of major importance. Alcohol-affected children who remain in the custody of biological mothers who are still abusing alcohol are at risk for failure to thrive and for physical or emotional neglect and abuse (Lemoine and Lemoine, 1992; Streissguth et al., 1985). Even the mother who is attached to the child and well motivated may have inadequate personal resources and social support to enable her to deal with the special needs of the alcohol-affected child (Wilson et al., 1984). This problem occurs, at least in part, because many alcohol abusing or dependent women were themselves reared in dysfunctional families and were themselves the victims of abuse, neglect, and perhaps, prenatal alcohol exposure (Briere and Zaidi, 1989; Cohen and Densen-Gerber, 1982). Because of their own backgrounds, as well as their current life-styles, they may have little to bring to their parenting roles.

For these reasons, an argument can be made that even in the absence of the effects of prenatal alcohol exposure, children might show poorer long-term outcomes due to being reared by addicted parents. There is an extensive literature on the children of alcoholics (Brown, 1991; Earls et al., 1988), and such children are often found to have a higher risk for developmental and behavior problems, probably as a result of unstructured, chaotic, and abusive homes. In addition, research suggests that children of alcoholics are at risk for psychological and emotional problems, including depression, low self-esteem, and learning difficulties (Brown, 1991). However, these findings should be viewed with caution. In such studies, it is often difficult to separate genetic, familial, and environmental factors. In addition, the description of the effects of being the child of an alcoholic varies considerably depending on whether it is from a clinical perspective (Brown, 1991) or from an experimental perspective (Sher, 1991). In experimental

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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studies, effects that are found often are not specific to children of addicted parents but, rather, appear to be the common result of parental dysfunction and psychopathology.

Caregiving Instability: Disruption in the Lives of Alcohol-Affected Individuals Anecdotal evidence suggests that children with FAS, ARBD, or ARND are more likely to have negative caregiving environments than are typical children or children with other disabilities. The first risk for these children is loss of their biological parents. Some investigators have noted that there is a high mortality rate among alcoholic women who give birth to children with FAS, as well as among women who report using alcohol in pregnancy (Bahna et al., unpublished; Hymbaugh et al., 1995). Spohr et al. (1993) in Germany reported that 11 of 60 mothers of children with a diagnosis of FAS (18.33 percent) had died by a 10-year follow-up. May et al. (1983) found a maternal mortality rate of 23.1 percent at the time of the child's diagnosis in their sample of Native Americans who were assessed between infancy and 17 years (with a mean age of about 6 years). Mena et al. (1986) found a rate of 30 percent (10 of 34) in a Peruvian sample at the time of diagnosis.

Clinical observation also suggests that children with FAS or possible alcohol-related effects often come to the attention of protective service agencies and frequently may enter foster care or be placed for adoption. In 1991, the most recent year for which comprehensive information is available, 429,000 children were in foster care in the United States. This represents an increase of 60 percent since 1986. However, the population of "young children" in foster care (defined as less than 3 or less than 5 years of age, depending on how states kept statistics) increased at a greater rate still. In a General Accounting Office report (U.S. GAO, 1994), three states that accounted for 50 percent of the total number of children in foster care—California, New York, and Pennsylvania—reported an increase of 110 percent in that age group over a five-year period. "Neglect" and "caregiver absence or incapacity" were the primary reasons for the removal of young children from their families in these states (68 percent in 1991). Examination of a random sample of case files at one major location in each state found that 78 percent of young foster children had a least one parent who abused alcohol or other drugs, and prenatal alcohol exposure was explicitly cited in 7.1 percent of these cases.

When clinical studies focus on the caregiving environment of individuals with a diagnosis of FAS, many of these children are reported to have experienced changes of custody and loss of their biological parents. Table 8-1 lists some of these studies and the patterns of caregiving reported in alcohol-exposed children. Because of the way in which data were collected, as well as different laws and customs in different locations, it is sometimes not clear whether children in out-of-home placement are in foster care or with relatives, or whether there have been multiple placements. Institutionalization is rare in the United States at the present

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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TABLE 8-1    Caregiver Instability Experienced by Alcohol-Affected Children

     

Caregiving Situation (%)


Study (year)


Location


N

At Least One Biological Parent

      Foster Care

Adopted

Institutionalizeda

Multiple Placementsb

May et al. (1983)

U.S. (southwestern Native American)

128

 

73.3c

 

Aronson et al. (1985)

Sweden

21

47.6

 

52.3c

 

Mena et al. (1986)

Chile

34

53

47% in foster care, with relatives, or in state institutions

Streissguth et al. (1991)

U.S. (Native American, Caucasian)

58

22

45

 

19

7

74

Caruso and ten Bensel (1993)

Minnesota

46

15.2

15.2

 

8.7

Steinhausen et al. (1993)

Germany

158

26.6

 

24.1c

 

25.3

24.1

Egeland et al. (in press)

Alaska

127

 

67

 

aThe percentage of children institutionalized will depend on national and state laws or regulations.
bInformation about multiple placements is not always available.
cThe authors did not analyze foster care and adoption separately

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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time but more common elsewhere. For these reasons, it may be difficult to compare studies. However, despite these differences, it is evident that children affected by prenatal alcohol exposure are at high risk for caregiving instability and loss of family.

In understanding the development and behavior of alcohol-affected children, it is necessary to take these environmental factors into account. Children who have been abused or neglected and who have experienced environmental instability are negatively affected by these experiences. They usually show effects on emotional and behavioral functioning and may have cognitive deficits as well. In designing research and interventions, these environmental factors will have to be considered.

Specificity

Clinical reports suggest that individuals with FAS have behavior problems that are common to most and attributable to alcohol-related brain damage. However, it is not clear that the behaviors reportedly shown by alcohol-affected individuals are different from those shown by other persons who are mentally retarded, have specific learning disabilities, are diagnosed with ADHD, or have been reared in dysfunctional families. Although studies have been done of groups of affected individuals, rarely have these groups been compared to other clinically diagnosed groups to identify factors specific to those who have been exposed to alcohol. For this reason, it is currently unknown whether the behavior problems reported in children and adolescents (Spohr et al., 1993; Streissguth et al., 1991) with FAS are specific to this group or are common to individuals with complex intellectual deficits.

One study compared children with a diagnosis of FAS and the so-called fetal alcohol effects to children of the same age and social status who were diagnosed with ADHD (Coles et al., 1994a,b). Whereas the children were similar in intellectual ability (mean IQ 81.44 versus 82.85), neuropsychological assessment revealed strikingly different patterns of deficits on a number of measures of "attention" (Mirsky, 1989). Although limited in scope, these results suggest that there may be distinct patterns of deficits in alcohol-affected children that can be identified and discriminated from other clinical groups. If it is true that there are specific problems in children with FAS and ARND, it may be possible to design targeted prevention efforts that will help to avoid the more negative outcomes that have been observed.

INTERVENTION AND PREVENTION OF
SECONDARY DISABILITIES

Prenatally exposed children are born at biological and social risk, and it is easy to predict that they will eventually show negative consequences. Although

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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TABLE 8-2 Examples of Interventions to reduce Prenatal Alcohol Effects

Intervention Point

Intervention Activity

Intended Outcome

Preconception

   

Public education
Substance abuse treatment
Reproductive counseling

Universal prevention
   Labeling beverages
   Public education
Targeting specific groups
   Women < 45
   Alcoholic women
Contraceptive services and counseling

Improved public awareness of warnings
Less drinking in targeted groups
Reduction of pregnancy in substance
    abusers

Prenatal

   

Obstetric care
Prenatal clinic
Substance abuse treatment

Counseling and education about drinking
Substance abuse treatment and case
    management

Fewer pregnant women drinkinga-c
Improved prenatal care
Improved pregnancy outcomes

Birth

   

Nursery
Obstetrics clinic

Neonatal diagnosis, identification, and
    treatment
Treatment for mother
Periodic developmental assessment and
   follow-up

Improved medical outcome
Reduced future FAS births
Improved mothering
Reduced mortality
Improved outcome for child

Infancy (0-3 yr)

   

Health care clinic
High-risk follow-up (e.g.,
   Child Find)
Emergency room
Protective services

Developmental screening
Early intervention services
   Medical care
   Speech therapy
   Physical therapy
   Occupational therapy
   Emotional, social
Foster care placement versus biological
    parents

Improved case finding and referral to
    treatment or intervention
mproved developmental outcome

Preschool (3-6 yr)

   

Health care clinics
Pediatricians
Head Start

Medical services
Education interventions
Intervention with parents, parenting classes

Improved health
Improved parenting

School Age (6-12 yr)

   

Pediatrician, clinics
School system
Protective services
Juvenile justice

Medical services
Special education services
Specialized service
Counseling; psychotherapy; family therapy

Improved functioning in home, school,
    and social settings

(table continued on next page)

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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TABLE 8-2 Continued

Intervention Point

Intervention Activity

Intended Outcome

Adolescence ( D 13 yr)

   

Mental health system
Juvenile justice
Educational system

Symptom-specific treatment
Substance abuse treatment
Social skills training
Vocational training; Case management
Cognitive rehabilitation

Improved functioning in home, school,
   vocational, and social settings

aOlegard et al. (1979).
bRosett and Weiner (1982).
cSmith et al. (1987).

in some cases the prenatal exposure may have had permanent effects, it still might be possible to avoid the development of secondary disabilities in these individuals by early identification and appropriate treatment over the life span. Table 8-2 presents an overview of the points in development at which intervention or treatment might be instituted for either parent or child. While these represent points at which interventions could and sometimes do occur, there has been little research done to determine whether there are positive changes in patient outcomes.

It is assumed that many children with FAS or other alcohol effects are receiving medical and therapeutic services of many kinds through private and public programs (e.g., Medicaid and Supplementary Security Income) and educational services through federally mandated Early Intervention Services, Head Start, or Special Education Services when they reach school age. In some states, Child Find and other systems include parental substance abuse or ''prenatal exposure" among the indicators of high-risk status, and such children can be routinely referred to tracking programs (see Anderson and Novick, 1992, for an overview of the federal response to the problem of FAS and pregnant women who abuse alcohol). As adults, disabled individuals may be treated in many different public and private systems.

However, although many children and adults affected by alcohol must be receiving services of many kinds, there is no systematically compiled information available describing the number that receive services or the kinds of services received by individuals with FAS or other alcohol-related deficits (Anderson and Novick, 1992). Legislation in 1989 required that state health departments begin annual reporting of the incidence of FAS as part of their responsibilities under the Maternal and Child Health Block Grant Program (U.S. DHHS, 1990). However, it has not always been easy to acquire the necessary information to compile such

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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reports. The Centers for Disease Control and Prevention (CDC) has provided funds to a number of states to facilitate the identification of cases of FAS and to improve surveillance. In many cases, these systems have encountered difficulties due to issues of confidentiality, inaccurate diagnosis in the neonatal period, and the use of different methods of categorization by systems that provide services (see Egeland et al., submitted for publication). For instance, many children with medical conditions related to FAS may not be given the International Classification of Diseases-10 code that specifies fetal alcohol syndrome (i.e., 760.71) but may be identified as showing failure to thrive (783.4), otitis media, mild mental retardation (317.0), developmental delays (319; 783.4), and so on. If the Medicaid, or other medical providers', data systems are accessed, the relationship between these conditions and FAS or ARND may not be evident. Similar problems exist in identifying the number of children who may be receiving Early Intervention or Special Educational Services in the states. Because FAS, ARBD, and ARND are not among the conditions identified as qualifying a child for services, such children will be listed under other, broader categories (e.g., mild mental retardation, behavior disordered, other health impaired). This has negative implications for surveillance, indicated prevention, and treatment.

Medical and Therapeutic Intervention

Children affected by maternal alcohol exposure have intervention needs in numerous areas. They need a primary care physician and may need specialty consultation in neurology, endocrinology, ophthalmology, otolaryngology, and developmental medicine. In order to manage behavior issues they may need psychiatric help with drug management, psychologists to help with behavioral issues and therapists to help the family to come into agreement on how to manage and cope with the alcohol affected individual. Educators, speech and language therapists, occupational therapists, and educational psychologists are almost always needed in helping to develop and monitor individual curricula. Finally the family may need help with social service supports. With adolescent and young adults with FAS there may be the need for birth control, alcohol treatment, and liaison with the criminal justice system.

While the family's physician is often called on to help in organizing the professional care needs of an FAS patient, a primary pediatrician or family physician will often feel ill equipped to handle management which is so complex and requires contact and working relationships with professionals in such disparate disciplines. Therefore it makes intuitive sense that the management of these patients would best be served through development of professional, multidisciplinary teams along a developmental disability model. To date there is no information in the literature describing this model of care with this specific condition and the advantages and drawbacks to this approach.

When the child has been identified through medical or educational screening

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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as needing further services, a comprehensive diagnostic assessment is recommended that should focus on medical, developmental, psychological, educational, social, and adaptive functioning. The particulars of this evaluation will depend on the age and cognitive status of the child. Because of the possibility of fine and gross motor delays, assessment of the infant and preschool child should include physical therapy and occupational therapy assessments. Assessment of speech and language function is also important. While there are almost no data on the effectiveness of such treatment in young children with FAS or ARND, Morse and Weiner (in press) cite two non-U.S. studies (Bierich, 1978; Koranyi and Csilky, 1978) reporting that standard kinds of medical treatment and early intervention services (e.g., occupational therapy) were associated with more positive outcomes.

The efficacy of psychotropic drugs in patients with FAS is not well established. Children are often referred for treatment of ADHD, and methylphenidate is usually the drug first tried for intervention with the symptoms of attention-deficit disorder. The frequency of success with this agent is anecdotally less than in children with ADHD of nonteratogenic cause. When methylphenidate is not successful, other drugs may be helpful, but no specific agents can be recommended at this time.

Educational Interventions for Alcohol-Affected Children

Some, although not all (see below), alcohol-affected children qualify for existing early intervention and special education services. Those who meet the criteria set forth in Public Law 94-142 and Public Law 99-457, which provide for the education of handicapped individuals under 21 years of age, can receive such services. The specific criteria for inclusion in programs are different in different states and even in different jurisdictions within states. In general, children aged 0 to 3 years are served in early intervention programs, and those in kindergarten and above (age 6 to 21) in the school setting. Services for preschool children (3 to 5 years of age) are much less standardized (see Anderson and Novick, 1992; Smith, 1993). Children older than 3 years who are at risk due to social deprivation, as well as other kinds of disabilities, can be served by Head Start programs.

At the present time, there are no empirical studies available of the effects of educational intervention, either generalized (the standard services offered to all qualifying children) or specific (programs specifically designed for those with FAS or ARBD), on alcohol-affected children. A review reveals several types of literature that bear on the issue of educational interventions with this group: (1) articles that review the known characteristics of alcohol-affected children and speculate on the meaning of these characteristics for the educator (Conn-Blowers, 1991; Davis, 1992; Nadel, 1985; Ugent et al., 1986); (2) case studies of children and clinical reports of effective teaching methods like those collected in Kleinfeld and Wescott's (1993) book Fantastic Antone Succeeds!; and (3) discussions

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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of programmatic approaches to these problems (e.g., Smith, 1993; Troccoli, 1992; Vincent et al., 1991).

Faced with a lack of published information about teaching methods and the effectiveness of treatment for alcohol-exposed children, Kleinfeld turned to what she called the "wisdom of practice" and collected reports of those experienced in working with FAS (Kleinfeld and Wescott, 1993). Some experienced teachers (Kvigne et al., 1993; Phillpot and Harrison, 1993; Tanner-Halverson, 1993) have developed methods that they find effective in working with alcohol-affected children and, in some cases, have shared these methods with other educators through in-service training and workshops. When these teachers' methods are examined, it is clear that their suggestions are well grounded in an understanding of young children and in practical knowledge about teaching. It is not clear, however, that these methods are of relatively greater value in alcohol-affected children than in other groups.

These suggestions are similar to those mentioned by Vincent et al. (1991) in their discussion of educational methods for children of substance abusers. They mentioned a number of assumptions and techniques that have proved to be useful in the school setting (Cole et al., 1989). These techniques include attitudes toward the child (e.g., the child should be seen as an individual, not a diagnosis), rules about professional relationships (e.g., all professionals involved with the family should meet regularly), and specific classroom techniques (e.g., curricula should be developmentally appropriate and involve experiential learning).

These suggestions, as well as those made by other experienced teachers (e.g., expand a child's verbalization; provide clear, unambiguous rules that are consistently enforced) are all sensible and humane. They are effective methods for use with children in general. However, to determine whether they are more or less effective with children with fetal alcohol effects, evaluation of methods and programs will be required. Such program evaluation should be directed at answering the following questions:

1.

Is the method effective? Before recommending that a particular strategy or program be used, it first must be tested to see if it improves performance for children in general; for children with FAS or other alcohol effects; and for alcohol-affected children with different characteristics (i.e., age, cognitive status, family structure, clinical history).

2.

What are the effective elements of the program? If a strategy seems to have potential, it is important to define the specific elements of the program and how each functions. Are all elements equally valuable? Some of the elements to be examined might include specific teaching methods, number of hours in the class, or a particular theoretical underpinning that guides intervention methods.

3.

What aspects of development are affected? At what aspects of the individual's development is the intervention directed? Are there changes in

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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outcome associated with various aspects of development—cognitive, social, behavioral, and so on—as a result of exposure to the methods under study?

4.

Are the effects persistent? Experience with other intervention programs directed at children with other kinds of developmental disabilities has indicated that effects may not be persistent unless intervention is continued.

Although these questions may seem difficult to answer, similar problems have been addressed in working with other kinds of developmentally affected children. In studying autism, for instance, the parameters necessary to effect positive changes have been established through empirical research (Rogers and Lewis, 1989; Simeonsson et al., 1987). In evaluating the effectiveness of early intervention for low birth weight, high-risk infants, Ramey and colleagues (Bryant and Ramey, 1987) have described the parameters of effective interventions and, therefore, provided recommendations that can be used in designing future programs. Such rigorous evaluations of treatments and interventions can be used as models in designing methods for intervention with children with FAS.

Other Interventions to Improve Outcomes for Affected Individuals

In addition to medical and educational interventions directed at affected individuals, other strategies have been considered to improve outcomes for alcohol-affected children and adults.

Professional Training and Education of Policymakers

FAS, one of the most common causes of mild and moderate retardation, is often not diagnosed correctly (Little et al., 1990). There may remain a stigma associated with alcohol abuse by women that makes it difficult for professionals to approach them, or the experience of interacting with such families may seem aversive. It may also be true that the training provided to most professionals in this area is not adequate. Research suggests that few professionals working with children have adequate training in identifying and treating the effects of fetal alcohol exposure in children (Good et al., 1990; James Bowman Associates, 1994; Weiner et al., 1988), although programs such as Weiner's that have provided professional education have been successful.

A survey conducted in Washington State in 1994 (James Bowman Associates, 1994) suggested that both the identification of affected individuals and the provision of services could be improved by better training of providers, many of whom, in both public health and social service roles, expressed discomfort in dealing with substance abusers. Problems identified in this area included lack of specific assessment methods and inadequate training of clinicians in making the diagnosis and of those providing education and intervention services. Recommendations made as a result of this survey included improved surveillance; enhancement

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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of the availability and accessibility of high-quality diagnostic services; development of a reporting system to monitor FAS, ARBD, and ARND; and improved training of professionals.

Support for Families

Because the child is being reared within a family, whether the biological family or an adoptive or foster family, intervention for the prevention of secondary disabilities in alcohol-affected children must address the needs of the family as well. The way in which this support is provided will depend on the age of the child and the kind of family situation that exists.

In infancy and the preschool period, most early intervention services are carried out in the context of the family. This pattern is generally true in any case, but it is also supported by Public Law 99-457, Part H, which requires that in the provision of treatment to children with developmental disabilities, the family's needs be considered. As a result, much emphasis is currently being placed on family involvement in the process of therapy and intervention. Although there are excellent reasons, both historical and practical, for this emphasis, it may result in difficulties in treating the children of substance abusers if appropriate care is not directed at dealing with such families. Early intervention activities are often based on a middle-class model that assumes more resources, particularly on the part of the child's mother, than may be present. There may also be assumptions made about the efficacy of intervention in infancy (Farran, 1990) and the parents' ability to act as therapists (Seitz and Provence, 1990) that may not be appropriate in families where alcohol abuse is a problem.

In dealing with both families who have produced a child with FAS and those caring for these children in foster or adoptive situations, it is necessary to examine the extent of coping abilities. Most families are stressed by the practical and emotional problems associated with rearing a child with developmental disabilities and the coping abilities of alcoholic families may be especially limited. As a result, such families or such mothers may need more services and support than is usually provided (or available). If the mother is still using alcohol, denial and all the other concomitants of her addiction process will interfere with the child's treatment. If the mother is recovering, the child's diagnosis may be very stressful and may interfere with her recovery process. Guilt over the child's disability will have to be faced and worked through, and plans made for the future. In addition, costs and problems involved in treatment may be overwhelming for a family with limited resources.

Parenting education can be an effective adjunct to other treatments and educational interventions. In women who are addicted to alcohol, childhood traumas often have contributed to current maladjustment. Frequently women have not had the experience of adequate parenting themselves, and their skills as parents are limited. Dysfunctional rules learned in the family of origin can result in a

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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transgenerational cycle of deficient parenting (O'Gorman and Oliver-Diaz, 1987). Parenting education programs with addicted mothers have had demonstrated benefits for both mother and child (Lief, 1981).

Because of the high incidence of abuse and neglect, alcohol-affected children often come into the foster care system or are placed for adoption (e.g., Egeland et al., submitted for publication). Unless well prepared for their care (Bliss et al., 1993) and given adequate systemic support, foster families can be stressed by the special needs of alcohol-affected children who often exhibit the behavioral effects of neglect (attachment disorder), abuse (posttraumatic stress disorder), and poor socialization, as well as the effects of their prenatal exposure. Some adoptive families intentionally choose "special needs" children, but others are as dismayed as biological families to learn that their children are developmentally delayed or otherwise disabled. It may take the family years to realize that the child's impairments will not be outgrown or repaired by their loving care (Dorris, 1989). These families may have to cope with the loss of their hopes for a healthy normal child or their feelings that they can somehow cure the child of this affliction.

Like other parents of handicapped children, families who have adopted children with FAS, ARBD, or ARND are often interested in participating in support groups so that they can share their feelings as well as information about their children. Because adoptive and foster parents often feel a good deal of anger toward the child's biological mother due to her drinking, some prefer separate support groups for foster or adoptive parents and biological parents. Others prefer meeting in joint support groups, finding that in this way the sets of parents are better able to come to terms with each other. Support groups have been formed in a number of states, but their effectiveness has not yet been evaluated.

LIMITATIONS AND BARRIERS TO THE PROVISION OF SERVICES

Although many individuals with FAS and related problems are receiving customary services, not all are eligible for services, and some who are do not come to the attention of social or educational agencies early in life. Some of the problems in providing treatment to alcohol-affected individuals have been identified. The Washington State survey (James Bowman Associates, 1994) noted that there were several reasons why individuals with FAS were not identified. First, FAS is not a recognized diagnostic label in most existing service systems and, therefore, does not establish eligibility for affected individuals. In turn, this lack of diagnostic status prevents access to existing services, particularly for parents who are not able to "negotiate the system." Finally, as discussed above, most alcohol-affected individuals require more than one type of service, and this problem requires that agencies cooperate with each other, which is often very difficult.

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Accurate Identification

It has been noted by a number of professionals (e.g., Clarren et al., 1987) that individuals with FAS are sometimes not identified during infancy. It may be very difficult to identify such children. However, it is also true that many health care and educational professionals, particularly those who are working with children beyond early infancy and those in the private sector, are not familiar with the range of effects associated with FAS, ARBD, and ARND, and do not understand the implications of these diagnoses for the child's development. In recent surveys of physicians, nurses, foster parents, and others, respondents have indicated that the majority of their information about the effects of substance abuse in pregnancy came from media reports, many of which are inaccurate (Coles et al., 1991b; Good et al., 1990; Morse et al., 1992; Nanson and Bolaria, 1991).

While most professionals may know that FAS involves facial dysmorphia and the potential for mental retardation, the most frequently described concern is externalizing behavior that is usually attributed to ADHD or hyperactivity (Astley, 1994). Because the research literature (see above) is inconsistent in its findings about the attentional effects of alcohol exposure and because, in the population of abused and neglected children usually referred for assessment, such behaviors may have various etiologies (Zeanah et al., 1993), finding that this is the characteristic most likely to be noted by clinicians is a matter of some concern. Because accurate information about FAS, ARBD, and ARND is not widely known among gatekeeping professionals, many other physical and behavioral problems associated with exposure may be overlooked. In addition, since the full range of problems associated with FAS has not yet been established, there is an understandable lack of experience in dealing with its consequences. A striking example of this problem was presented by Little et al. (1990) who found that of 40 infants whose mothers were identified prenatally as alcoholics, and who had the physical features associated with FAS, none were identified correctly by medical professionals.

Although many providers are willing to serve children with FAS, sometimes it is difficult to identify individuals accurately. At present, there are no universally applied diagnostic criteria or instrument(s) for the diagnosis of FAS, ARBD, and ARND. The Washington State survey (James Bowman Associates, 1994) suggested that the accuracy and efficiency of diagnosis could be improved through more extensive training of a wider range of clinicians and the creation of regional diagnostic centers. The authors also suggested that the confidentiality issues that often interfere with accurate diagnosis be reexamined in order to develop more effective ways of using information while protecting the rights of clients.

Eligibility and Measurement of Development

Another problem is related to the young child's characteristics and the problem

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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of measurement. From infancy through early school age, cognitive deficits are usually "mild" and motor deficits are relatively subtle compared to those usually treated in early intervention programs. Generally, to receive therapeutic services, children must meet state or district criteria, which usually involve standardized testing. Often, to receive services, infants and preschool children must score less than 70 (2 standard deviations [SD] below the mean) on a standardized test in at least one area of functioning (usually cognitive, motor, or language development) or, in some cases 1.5 SD in two areas. Because alcohol-exposed infants may not score in this deficit range during the first year, many do not qualify for services during that time. It might be assumed, given that children do not perform poorly on standardized tests during this time, that they are not really damaged by their prenatal exposure but by other environment factors. However, children with other conditions associated with later deficits (e.g., Down syndrome) may not always score in the deficit range during the first year due to the problem of measurement associated with infant tests. Because the prognosis for children with Down syndrome is well known, however, such children are usually not denied services.

Similar problems can occur when the child is older, as well. Many of the indicators of adult cognitive and emotional functioning are, by definition, missing in infants and preschool children (e.g., language, ability to care for one's self). In currently available data from several sources, alcohol-affected children who will later show mild retardation at school age, score in the low-average range at 12 months and in the borderline range at 24 months (Platzman et al., 1986). These patterns do not result solely from deficits in the validity of test instruments or from poor reliability, but from the nature of the developmental process itself and, probably, from the impact of negative social environments and the particular kinds of brain damage caused by fetal alcohol exposure (see above).

If further research confirms this pattern of declining scores with age, children who need services might not be identified early enough during development to receive preventive treatment but must wait until more severe deficits become manifest. This raises concern, because it is much more difficult to provide useful treatment (see Campbell and Ramey, 1994).

Inconsistency in Follow-Up

Inconsistency in follow-up may be due to many factors. To receive high-quality services, parents of developmentally delayed children must be able to act as advocates with educational and social service systems. When children remain with their biological parents or with relatives, they can be influenced by dysfunction within these families. Because of family problems, which may include the impairments associated with substance abuse, these families can be inconsistent in providing well-baby checkups and immunizations and in following up on medical or educational recommendations (Wilson et al., 1984). Unless severe

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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abuse or neglect brings the child to the attention of authorities, children often will not be noticed until they begin to fail at school or suffer from behavior problems (usually externalizing) that bring them to attention. By this time, usually early school age, it may be difficult to overcome the combined effects of prenatal exposure and lack of educational or medical intervention. When children are in the foster care system, they also may not receive adequate services, for many well-known reasons.

Even when developmental delays are noted, health and educational professionals may not be experienced in dealing with alcohol-abusing parents or with the kind of family dysfunction that often accompanies addiction (Beckwith, 1990). As a result of ineffective interactions with the child's caregivers, treatment recommendations may not be followed. Wilson et al. (1984) identified a number of children with FAS who needed medical and social services. Mothers were noted to have poor psychological adjustment, and half of them were still using alcohol. Because of their own difficulties, mothers were found to be ineffective both in parenting and in their ability to make use of medical or other available services that were needed by their affected children. In another study of low-SES school-aged children prenatally exposed to alcohol, Coles and colleagues (unpublished data) found that although there was a high incidence of medical problems noted in children who could be diagnosed with FAS or possible alcohol-related effects, the use of health care, including checkups, acute care visits, and emergency room visits, was lower in this group than in SES controls.

SUMMARY: INTERVENTION AND TREATMENT

Although the most desirable way of dealing with fetal alcohol syndrome, ARBD, and ARND is through prevention of the birth of an affected child, provisions must be made for affected children when such efforts fail. Efforts to prevent secondary disabilities will involve coordination of several levels of identification, intervention, and treatment in order to maximize the child's postnatal development. Such efforts will also require changes in professional education, application of special educational methods, and changes in some public policy agendas. As such efforts are undertaken, it is important to recognize that although children are affected by prenatal exposure to alcohol, a great deal of neurological development occurs postnatally, and if child care, nutrition, and environment are adequate, it is probable that alcohol-exposed children can make considerable progress. This is particularly true when the insult has not been severe. Among other groups of high-risk children, adequate education and training, together with protection from negative child rearing environments and attention to predictable crises at various developmental stages, can make the difference between achieving a reasonable degree of independence and life satisfaction and more negative outcomes (Campbell and Ramey, 1994).

Negative reports of developmental outcomes for children affected by prenatal

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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alcohol exposure are distressing, particularly when there have been attempts at intervention and prevention over the child's life span. These outcomes have led to the suggestion (LaDue et al., 1989; Spohr et al., 1993) that interventions, including placement in foster care or adoption, do not change the prognosis for children affected by prenatal alcohol exposure. Such negative ideas have affected the way in which children with FAS, ARBD, or ARND are treated by caregivers, health care providers, educators, and social service agencies (Conn-Blowers, 1991; Streissguth, 1992). Clearly, there is a need for better understanding of these issues. However, this understanding will require a number of changes in the approach to this disorder. First, we must provide for a well-organized strategy directed toward investigation of the clinical needs of affected individuals.

RECOMMENDATIONS

The committee concludes that there are no specific programs to treat children with FAS, ARBD, or ARND, and other efforts to prevent secondary disability in these children are insufficient and inadequate. Given the known value of early intervention, however, it is important to identify children with FAS, ARBD, or ARND as early as possible. Thus, in the committee's view, action to bring needed programs and efforts to an acceptable level must proceed on a number of fronts. For example, as pointed out in other chapters, there is a critical need for more consistent diagnostic criteria and better surveillance. Application of these criteria requires the availability of well-trained professionals in social services, education, and health care, as well as those charged with developing policies that impact services for special children. The committee, therefore, recommends the following actions to address these needs:

Clusters of high-quality diagnostic and treatment services should be available locally and regionally.

Programs that offer training of professionals and that serve as resource centers for schools and medical clinics should be established.

Programs serving children with FAS, ARND, or ARBD should meet the special, complex needs of such children, including consideration of the families involved and increased availability of parenting training for caretakers (birth parents, foster parents, and adoptive parents).

Community outreach programs should be available to establish appropriate lines of communication with clinicians, judges, police, psychologists, teachers, and both birth and adoptive/foster parents.

Educational materials should be developed for professionals who deal with school-age children to increase their awareness of FAS, ARND, or ARBD as a potential cause of ADHD-like behaviors, including hyperactivity, and to facilitate their referral of such children to other appropriate or needed services.

Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Ways should be developed to address the issues of confidentiality that apply to identifying and treating children exposed to alcohol (or other substances) in utero.

Clinical practice guidelines should be developed for follow-up and treatment of children with FAS, ARND, or ARBD.

A necessary complement to the above actions is an expanded knowledge base. The committee, thus, views further research as essential to providing adequate treatment of children affected by FAS, ARND, and ARBD. The committee recommends additional research in the following areas:

research to distinguish the role of the postnatal environment in modifying the effects of fetal alcohol exposure, including research on adopted versus nonadopted children with these disorders;

research on the social and emotional status of school age children affected by FAS, ARND, or ARBD and research on the existence of specific impairments associated with these syndromes, particularly impairments in attention, language, sensory integration, and other behavioral problems;

further basic research using animal models to examine the underlying neurobiological mechanisms of behavioral and environmental interventions over the life span; and

evaluation of the effectiveness of educational interventions on children with FAS, ARND, or ARBD, possibly beginning with the examination of educational interventions that look promising in case studies or in studies of children exposed to illicit drugs in utero.

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Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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Suggested Citation:"8 The Affected Individual: Clinical Presentation, Intervention, and Treatment." Institute of Medicine. 1996. Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, DC: The National Academies Press. doi: 10.17226/4991.
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It sounds simple: Women who drink while pregnant may give birth to children with defects, so women should not drink during pregnancy. Yet in the 20 years since it was first described in the medical literature, fetal alcohol syndrome (FAS) has proved to be a stubborn problem, with consequences as serious as those of the more widely publicized "crack babies."

This volume discusses FAS and other possibly alcohol-related effects from two broad perspectives: diagnosis and surveillance, and prevention and treatment. In addition, it includes several real-life vignettes of FAS children.

The committee examines fundamental concepts for setting diagnostic criteria in general, reviews and updates the diagnostic criteria for FAS and related conditions, and explores current research findings and problems associated with FAS epidemiology and surveillance.

In addition, the book describes an integrated multidisciplinary approach to research on the prevention and treatment of FAS. The committee:

  • Discusses levels of preventive intervention.
  • Reviews available data about women and alcohol abuse and treatment among pregnant women.
  • Explores the psychological and behavioral consequences of FAS at different ages.
  • Examines the current state of knowledge about medical and therapeutic interventions, education efforts, and family support programs.

This volume will be of special interest to physicians, nurses, mental health practitioners, school and public health officials, policymakers, researchers, educators, and anyone else involved in serving families and children, especially in high risk populations.

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