Literature Review: Fetal Alcohol Syndrome
This literature review is an introduction to fetal alcohol syndrome (FAS), and some of its related disorders. There will be a detailed explanation of the 4-Digit Diagnostic Code used for evaluation of FAS, and discussion excerpts relating to stigma, prevention, and public costs concerns of fetal alcohol syndrome. The final section will relate to education concerning FAS, methods and accommodations, and how they are addressed in an inclusionary general education setting.
Theterm fetal alcohol spectrum disorders (FASD) is an umbrellaterm describing the range of effects that can occur in an individualwhose mother drank alcohol during pregnancy. These effects includephysical, mental, behavioral, and/or learning disabilities withpossible lifelong implications. FASD includes disorders suchas fetal alcohol syndrome (FAS), alcohol-related neurodevelopmentaldisorder, and alcohol-related birth defects (Astley & Clarren, 2000; Ryan, Bonnett, & Gass, 2006). The term fetal alcohol syndrome was introduced in 1973 by Jones and Smith (Warren & Foundin, 2001), and was later reinforced by earlier papers published by Lemoine (as cited in Golden, 2005). Fetal alcohol syndrome has many similarities to other disorders and disabilities, such as attention deficit hyperactive disorder (ADHD), Down syndrome, learning disabilities, behavioral disorders, and physical disabilities. The main factor and difference between FAS and most other severe disabilities is that FAS is a preventable disorder. Prenatal alcohol exposure is one of the leading preventable causes of birth defects and developmental disabilities (Sidhu, 2002).
In 1997 Dr. Susan Astley introduced the 4-Digit Diagnostic Code as an alternative to the standard gestalt method. Astley (as cited in Astley & Clarren, 2000) found that:
The outcomes of the patients were more accurately and comprehensively documented by the 4-Digit Diagnostic Code, because of its use of quantitative, objective measurement scales and specific case definitions. The four digits in the code reflect the magnitude of expression of the four key diagnostic features of FAS in the following order: (1) growth deficiency; (2) the FAS facial phenotype; (3) central nervous system damage/dysfunction; (4) gestational alcohol exposure. The 4-Digit Diagnostic Code is generated by first recording key clinical data on the standardized FAS Diagnostic Evaluation Form and following specific case definitions to generate each digit.
The magnitude of expression of each feature is ranked independently on a four-point Likert scale with 1 reflecting complete absence of the FAS feature and 4 reflecting a strong ‘classic’ presence of the FAS feature. The 4-Digit Diagnostic Code is being used effectively for diagnosis, screening, and surveillance efforts in all Washington State FAS DPN clinics (p. 402).
When measuring growth deficiency the height and weight are based on centile sizing C is equal to or less than 3 centile, B is greater than 3 centile but less than or equal to 10 centile, and A is over 10 centile. The first step in deriving the Likert rank for growth is to derive the ABC score for growth. If a patient’s height centile was 8% and weight centile was 2%, an ABC score of BC would be assigned. The final step in deriving the Likert rank for growth is to convert the ABC score for growth into a 4-Digit Diagnostic Code rank. A score of BC translates into a 4-Digit Diagnostic Code rank of 3. This rank would serve as the first digit in the 4-Digit Diagnostic Code (Fig. 1) (Astley & Clarren, 2000).
The three key diagnostic features that characterize FAS facial phenotypes are small palpebral fissures (the width of the eye opening), a smooth philtrum (the space between the nose and upper lip), and thin upper lip. Palpebral fissure length (PFL) scores are computed with adjustment for age and when possible, race (Hall et al., 1989, as cited in Astley & Clarren, 2000). When deriving the Likert rank for facial phenotype you give an ABC score for facial phenotype. If a patient’s palpebral fissure lengths (PFL) are smaller or equal to -2 SD below the norm the z-score would be a C rating. If it is within -2 to -1 it is a B rating, and if it is over -1 it is an A rating. The philtrum and upper lip are rated separately on the Likert scale, and the scale converts as: 4-5=C, 3=B and 1-2=A. The final step in deriving the Likert rank for facial phenotype is to convert the ABC score for facial phenotype to a 4-Digit Diagnostic Code rank. A CAB score translates into a 4-Digit Diagnostic Code rank of 2. This rank would serve as the second digit in the 4-Digit Diagnostic Code (Fig. 1).
Brain dysfunction is the most significant disability for FAS. Alcohol alters the developing brain in a variety of ways including structural to subtle alterations in chemical levels (West, 1986, as cited in Astley & Clarren, 2000). An accurate diagnosis is extremely important for treatment planning. Brain damage can be defined in a large number of ways that are each associated with a broad spectrum of disability. The four-point Likert scale separates patients with definite evidence of brain damage (Likert rank 4) from patients with no evidence of brain damage (Likert rank 1). “The 4-Digit Diagnostic Code rank for brain does not rank the severity of structural, neurological or functional problems faced by the patient. Rather, it ranks the strength of evidence supporting the presence of an organic cause for cerebral/cerebellar dysfunction” (Astley & Clarren, 2000, p. 405).
Lastly prenatal alcohol exposure is ranked according to the quantity, timing, frequency, and certainty of exposure, though case studies speak to the fact that the amounts of alcohol exposure that is harmful to the fetus are not available and unclear. (Stratton, Howe, & Battaglia, 1996). The exposures are separated into four clinically meaningful groups: 4) confirmed high exposure; 3) confirmed exposure, but level is low or unknown; 2) unknown exposure; 1) confirmed absence of exposure.
There are other evaluation methods; Astely (2006) conducted a follow up evaluation comparing the 4- Digit Diagnostic Code with the Hoyme Diagnostic Guidelines. She found the 4-Digit method more accurate overall, and a better evaluator of the entire spectrum “Access to services should be based on an individual’s disabilitiesand not on what caused their disabilities. Therefore, servicesshould be available for individuals across the full continuumof FASD and not just those with FAS” (p. 1544).
Many of the studies mentioned that there was a definite stigma attached to the diagnosis of FAS for the child and the parent. Koren, Fantus, and Nulman (2010) found “A majority of participants reported feeling unsure about the negative stigma associated with FASD, describing colleagues as judgmental and suggesting that kids with FASDs are possibly better off not being labeled” (p. e83). They further suggested that other labels, such as Autism or ADHD, do not hurt the child because they have become so familiar and part of the school’s special needs language. The fact that FAS is preventable, and the negative conotation of useing alcohol as a tertogen is a reason some parents would like to stay away from the FASD labels.
Between the discovery of thalidomide as a teratogen (1966), and the FAS findings of Jones and Smith in 1973, Americans were introduced to the fact that chemicals and alcohol could do damage to the fetus. It still took until 1989 for the Alcoholic Beverage Labeling Act to mandate putting warning labels on all alcoholic beverages sold in the United States. (Golden, 2005). Still in 2001 May and Gossage (2001) estimated that prenatal exposure to alcohol affected more than 40,000 newborns annually. The amount of alcohol that the mother consumes, and its effect on the fetus is topic of debate, but the general consensus is that women should completely abstain from drinking alcohol as soon as they suspect pregnacy ( Golden, 2005; Ryan, Bonnett, & Gass, 2006; Schenck, Cole, & Medina, 1994)
Another focus due to the preventive nature of FAS is the national costs of treatment, accommodations and legal fees. Lupton, Burd, and Harwood (2004) found that we spend up to $6 billion per year on FAS by itself when you calculate health costs as well as social and justice systems combined with morality, disability and the legal system. Lupton et al. (2004) also widen the focus on the prevalence of FAS and overall prenatal alcohol exposure by stating:
FAS is increasingly being recognized as a large public health problem with high potential for the prevention of future cases and for the prevention of excess disability and premature mortality in persons who are affected. Each day, from 6–22 infants with FAS are born in the United States, and as many as 87–103 more are born with other impairments resulting from prenatal alcohol exposure. Updated and improved cost data on FAS should be a research priority (p. 44).
Koran et al. (2010) suggest that cooperation within all factions of the system is necessary for improvement, “Effective FASD advocacy must include facilitation of communication mechanisms and information sharing between referral sources, diagnostic clinics, caregivers and teachers” (p. e86).
To create suitable curriculum for FAS educators must consider what they want to achieve. The majority of teachers would agree that the purpose of education is to help students become as productive and independent as possible as adults. This doesn’t mean that all young people will reside completely independently, but we should give them every opportunity to function in mainstream settings with as little support as necessary. Burgess and Striess (1992) state “If independence and productivity are the goals of education, then the principles guiding instructional programs must be consistent with those objectives” (p. 28).
Some important principles for the classroom are early intervention (identify if not diagnosed), targeting functional skills (generalization), teaching communication skills (language, verbal, gestural, and behavioral), teaching social skills (focus on real-life events), and managing challenging behaviors (all behavior is communication). Some of the challenges for FAS are the variety of disabilities and the similarities of behaviors to other disorders. Kable, Coles, and Taddeo (2007) stated:
Attention problems are particularly common complaints during early and middle school years. Problems reported often include difficulty sitting in class, problems with focus, poor impulse control, difficulty learning, attention disorders, and often problems with sleep. By this time, many children with FASDs have been diagnosed as having attention-deficit/hyperactivity disorder (ADHD), conduct disorders, learning disabilities, or various mental health disorders. Such diagnoses might or might not be appropriate. As learning requirements become more abstract and less concrete during the school years, executive functioning deficits become more apparent. One area where such executive function problems manifest is difficulty understanding cause-and-effect relationships and difficulty learning from mistakes. This can lead to problems with behavior (temper tantrums, outbursts) as well as social difficulties (p. 1429).
Due to lack of studies it is unknown if early diagnosis has helped teachers in developing appropriate involvement to their affected students. “While previous research provides some insight into improving the potentials of early intervention with FASDs, to date few initiatives have documented FASDs in the educational context” (Koren et al., 2010, pp. e79-e80). Some strategies that are effective with children with FAS are the five keys to working with children with attention deficit disorders “structure, persistence, consistency, brevity, and variety” (Schenck, Cole, & Medina, 1994, p. 145). That open ended approach can be used to accommodate or modify the classroom for the student’s different disabilities. Such as using ADHD modifications for an easily distracted student (quiet area, low traffic area, away from windows), and if there is a physical disability such as vision, then use modifications for that impairment (close location, large text books, computers).
As stated earlier, the difficulties in evaluating and accommodating FAS are increased by the wide spectrum of the syndrome. The challenge with including students with FAS is the variety of physical, learning and behavioral disabilities represented in the FAS spectrum (Burgess & Streissguth, 1992). As well as assessing and accommodating learning disabilities stemming from FAS in the classroom there are behavioral issues that need to be addressed. A study by Schonfeld, Mattson, and Riley (2005) examined the moral maturity of children (10-18 years old) who had been exposed to prenatal alcohol. They evaluated 27 students (ALC) with exposure and 29 non-exposed students (CON), and found a distinctly lower moral value judgment dealing with relationships with others in the ALC group. In a separate study O’Connor, et al (2006) found:
Children with fetal alcohol spectrum disorders (FASD) have significant social skills deficits. The efficacy of a child friendship training (CFT) versus a delayed treatment control (DTC) was assessed for 100 children ages 6 to 12 years with FASD. Children in the CFT showed clear evidence of improvement in their knowledge of appropriate social behavior, and according to parent report, CFT resulted in improved social skills and fewer problem behaviors compared with DTC. Gains were maintained at 3-month follow- up. After receiving treatment, the DTC group exhibited similar improvement. Teachers did not report improvement as a function of social skills treatment. The findings suggest that children with FASD benefit from CFT but that these social skills gains may not be observed in the classroom (p. 645).
The academic skills of students with FAS may not be at grade level, and their performance compounded by the behavioral and social disabilities. One accommodation to consider when dealing with behavior issues is to use positive behavioral support to reinforce the student when they use proper behavior instead of punitive reaction to improper behavior.
Students with FAS may perform better or worse in certain subjects. It is common for the preschool age child to be behind in reading skills (Schenck, Cole, & Medina, 1994). As the student reaches middle school there are a number of learning disabilities, but math ability seems particularly difficult (Lebel, Rasmussen, Wyper, Andrew, & Bealieu, 2010). “These students tend to be fairly concrete and may do well academically during the early years of school. When subject matter becomes more abstract, however, they may have increasing difficulty keeping up” (Burgess & Streissguth, 1992, p. 27). One of the better accommodations for teaching Students with FAS is to break down tasks in to smaller sub-tasks for easier comprehension.
There are many techniques and curriculum to prepare educators and the school system for FAS accommodations Koran, et al. (2010) suggests these five points:
1) A special needs team is convened, generally comprised of the child’s parent(s), teacher, vice principal, and other special needs designated staff as required and/or available (i.e. material and resource teachers, speech/language, occupational therapists and psychologists). While parents are intended to be team members, it was commonly reported that consistent parental participation is rare.
2) When a student has been diagnosed prior to or during the school year, the child’s teacher will develop an IEP with the support of a special needs team. The student’s primary teacher is most often responsible for developing and implementing adequate supports.
3) If the student has not been diagnosed but there are concerns, their case will be discussed by a special needs team in the school. If warranted the student will be put on a waiting list for educational assessment. An educational assessment does not always lead to diagnosing a child with a particular learning disorder, but rather it can be used to inform on a child’s learning needs by demonstrating their academic strengths and weaknesses.
4) Reports on the educational assessment process varied widely. All participants reported assessments were effective and useful however, the timeframes for assessments to be conducted varied from two weeks in one school to four months in another school. Regardless of the waiting period however, the special needs team in most schools will attempt to support the child’s learning needs whether the student has been formally assessed and diagnosed or not.
5) If deemed helpful to the school objective of promoting child learning and facilitating academic success (e.g. by addressing a antisocial/non academic behaviors), the team will recommend the child be seen by their family physician to consider a medical diagnosis and referral to suitable programming (pp. e82-e83).
Koren, et al. (2010) goes on to state that the school boards in his study both emphasized principle of inclusion as very important in shaping the school settings and attending to the needs of all their students. “In addition, all schools (in Toronto) are reported to approach special needs education utilizing a team-model approach. Addressing special needs in Toronto schools, including FASDs, require a school environment guided by principles of equality and inclusion of all children” (p. e82).
Astely, S. (2006). Comparison of the 4-digit diagnostic code and the hoyme diagnostic guidelines for fetal alcohol spectrum disorders. Pediatrics , 118 (4), 1532-1545.
Astley, S., & Clarren, S. (2000). Diagnosing the full spectrum of fetal alcohol-exposed individuals: Introducing the 4-digit dignostic code. Alcohol & alcoholism , 35 (4), 400-410.
Burgess, D., & Streissguth, A. (1992). Fetal alcohol sydrome and fetal alcohol effects: Principles for educators. Phi Delta Kappan , 74 (1), 24-29.
Golden, J. (2005). Message in a bottle: The making of fetal alcohol syndrome. Cambridge, Massachusetts: Harvard University Press.
Kable, J., Coles, C., & Taddeo, E. (2007). Socio-cognitive habilitation using the math interactive learning experience program fo alcohol-affected children. Alcoholisma: clinical & Experimental Research , 31 (8), 1425-1434.
Koren, G., Fantus, E., & Nulman, I. (2010). Managing fetal alcohol spectrum disorder in the public school system: A needs assessment pilot. Canadian Society of Pharmacology and Therapeutics , 17 (1), e79-e89.
Lebel, C., Rasmussen, C., Wyper, K., Andrew, G., & Bealieu, C. (2010). Brain microstructure Is related to math ability in children with fetal alcohol spectrum disorder. Alcoholism Clinical & Experimental Research , 34 (2), 354-363.
Lupton, C., Burd, L., & Harwood, R. (2004). Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics Part C: Seminars in Medical Genetics , 127 (1), 42-50.
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O’Connor, M., Frankel, F., Paley, B., Schonfeld, A., Carptenter, E., Laugeson, E., et al. (2006). A controlled social skills training for children with fetal alcohol spectrum disorders. Journal of Consulting and Clinical Psychology , 74 (4), 639-648.
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Schenck, R., Cole, J., & Medina, C. (1994). Fetal alcohol syndrome, fetal alcohol effects: Implications for rural classrooms. The American Council on Rural Special Education ACRES (pp. 136-151). Austin, Texas: New Mexico State University.
Schonfield, A., Mattson, S., & Riley, E. (2005). Moral maturity and delinquency after prenatal alcohol exposure. Journal of Studies on Alcohol , 66 (4), 545-554.
Sidhu, J. (2002). Alcohol use among women of childbearing age: United States, 1991-1999. Morbidity and Mortality Weekly Report , 51 (13), 273-276.
Stratton, K., Howe, C., & Battaglia, F. (1996). Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, and treatment. Washington, DC: National Academy Press.
Warren, K., & Foundin, L. (2001). Alcohol-related birth defects: The past, present and future. Alcohol Research & Health , 25 (3), 153-158.
This was a the layout (pdf) for a presentation board regarding Fetal Alcohol Syndrome: