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Lack Of Research-Based Interventions For Children With FASD
In 1973 University of Washington doctors Kenneth Jones and David Smith linked a constellation of physical abnormalities to children who had been exposed to substantial amounts of alcohol in-utero. Prior to that, written history has mentioned the harmful effects of alcohol on the developing fetus. Dating back as far Ancient Greece - and arguably mentioned in the Bible - much has been discovered about the impact of maternal alcohol consumption on a developing embryo and fetus. Researchers know that certain physical abnormalities (especially in the face and head), along with a lack of normal growth, and central nervous system damage comprise a trio of symptoms that may herald a diagnosis Fetal Alcohol Spectrum Disorders (FASD). They also know that there is a variable continuum as to the amount of drinking that is required to cause these abnormalities. There are other known variables such as the timing of alcohol ingestion along with the mother's general health and nutrition that may impact the severity of the damage caused. Because of the unknown exposure threshold, pregnant women are strongly advised to abstain from alcohol. Regardless of the variables, researchers know one fact: FASD is the only entirely preventable birth defect and disability.
Not all women may know this fact. Very young women may not have been schooled about FASD prior to conceiving. Poor women who do not get prenatal care may not have been told about the impact of drinking. The majority of women have seen the Surgeon General's warnings on a bottle of alcohol, have been told by family members, or have been told by their obstetrician. Some women disregard the warning about this preventable disorder, and for a variety of reasons, decide to consume alcohol. Their children could be among the 10 per 1,000 births that have the resulting abnormalities. These children may exhibit complex memory functioning on the milder side of the continuum or more severe cognitive and behavioral issues. Facial abnormalities also increase with the severity of the dysfunction (dbpeds.org).
Although, as educators it is not our job to police what women eat and drink, but it is within the scope of our responsibility to find ways to identify and educate these children maximize their cognitive and affective potential. Bogjanen, Humphrey, and Ryan, in their article for Rural Special Education Quarterly called Left Behind: Lack of Research-Based Interventions for Children and Youth with Fetal Alcohol Spectrum Disorders, denounce the lack of evidence-based research supporting effective intervention. The authors, along with other researchers, have tried to underscore the “serious absence of research to substantiate evidence-based practices” to improve the outcomes for these children.
In their article, Bogjanen et al. discusses the lack of those evidence-based practices that the Individuals with Disabilities Education Act (IDEA) requires. IDEA (2004) contains verbiage that mandates each state to have “policies and procedures” that refer early intervention services to a child under the age of three if he or she is identified as “affected by illegal substance abuse or withdrawal symptoms resulting from prenatal drug exposure”. This is where the problem lies. There are no substantive studies that demonstrate the evidence-based practice or data required. The authors felt that most of the published studies on FASD were “of poor to fair quality” and “lacked scientific rigor…and provided limited reliable data with which to make recommendations regarding efficacious interventions for children and youth with FASD.” They also explained that despite their extensive search for data, the authors concluded that there is “limited scientific evidence upon which to draw recommendations” for effective interventions. They found no school-related interventions that met their criteria. The article stated that policy makers, educators, and other service providers need to collaborate and research. Bogjanen et al. found three non-school-related studies that met their criteria for efficacy. Two of these studies were of quasi-experimental design and one was a case study used for experimental design. In all studies, participation waned either due to the mother's lack of participation (of 80 women in one study, only 16 completed it) or children entering the foster system.
Despite the numbers, the results all favored early intervention and those that initiate family-based interventions during the immediate postpartum period, yielded more positive results. They recognize the importance of family-centered services, wrap-around services, and the benefits of both together. Their study found some emerging evidence of research-based practices that show promise. They found that alleviating maternal depression and stress, giving the child social skills training and parental support, and skill acquisition reinforcement through computer simulation are interventions may have impact on the outcome.
While there is a dearth of research on evidence-based practices for children with FASD who comprise 10 in 1,000 births, there have been numerous studies and interventions for children with Autism Spectrum Disorders (ASD) comprising 6.7 per 1,000 children born. In 2005, the Center for Disease Control (CDC) indicated that FASD outranks ASD and Downs Syndrome in prevalence. Even with this fact, students with FASD and their parents and teachers have not benefited from the social, political, and financial support that the ASD children have.
This article leaves one to wonder why. In the past 37 years, much has been written about prenatal alcohol exposure. The Surgeon General's warning labels have been mandatory on bottles of alcohol since 1989. FAS is recognized as the most commonly known preventable cause of cognitive impairments in the western world. Why are there so few research-based and evidence-based studies for educating these students? Why are editors of research journals not soliciting research studies to validate these practices? With so many children having some form of FASD, why is more funding from the Institute of Education Sciences (U.S. Department of Education) or National Institution of Health not available? Why, with the prominence of information to prevent FASD, are there no data-driven and evidence-based practices that general classroom and special education teachers may use to differentiate instruction? Could it be the stigma felt by the mothers and their resulting disinclination in participating in research studies? Possibly even our society feels some shame for promoting and glorifying alcohol drinking during commercials, on billboards, in movies, and in our own social situations. Regardless of the reasons for the lack of research, these children need early and continued social, affective, and cognitive support in order to maximize their potential.
Bohjanen, S., Humphrey, M.,m & Ryan, S. (2009). Left Behind: Lack of Research-Based
Interventions for Children and Youth with Fetal Alcohol Spectrum Disorders. Rural Special Education Quarterly, 28(2), 32-38. Retrieved from Academic Search Elite database.
Robinson, L., & Kalberg, W. Fetal Alcohol Syndrome. Developmental Behavioral Pediatrics
Online. 21 Sept. 2004. Web 9 Feb 2010.