Management of Fetal Alcohol Spectrum Disorders (FASD)
The management of fetal alcohol syndrome (FAS) or fetal alcohol spectrum disorders (FASD) starts with a diagnostic evaluation that consists of both making the diagnosis of an FASD and also ensuring that the family understands the individual's unique medical and neurobehavioral profile. A typical FASD evaluation is performed by a team consisting of a pediatrician or developmental pediatrician, psychologist, social worker and speech-language pathologist. The team may also include an occupational therapist or educational specialist. There are pediatricians who can diagnose an FASD based on the Institute of Medicine (IOM) recommendations (Institute of Medicine, 1996) or the CDC FAS Guidelines for Referral and Diagnosis (CDC, 2004). However, in many cases it is important to have a geneticist evaluate the individual for other genetic conditions that may be present in addition to an FASD or that could mimic the presentation of an FASD.
Because FASDs can affect the facial structure, growth, central nervous system, and other organ systems of the individual, appropriate medical referrals should be pursued as needed. For example, some individuals with FASD may have sensorineural hearing loss, vision problems or cardiac abnormalities that may require the help of additional specialists. Failure to thrive and short stature may require evaluation by a gastroenterologist, endocrinologist, nutritionist. The FASD diagnostic process can be viewed as part of a continuum of care that helps identify and facilitate the appropriate health care, education and community services for the child and for the family. While there is no cure for FASDs, several strategies may be helpful for individuals and their families beginning in infancy and continuing through adulthood.
Individuals with an FASD are at risk for secondary conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and anxiety that may necessitate psychopharmacologic intervention. In these cases, appropriate interventions include involvement from child psychiatrists, developmental pediatricians, neurologists and/or other mental health professionals. An interdisciplinary approach often helps in the overall management of a child with an FASD.
The Influence of Brain Dysfunction on the Behavior of Children with FASD
Developmental and behavioral problems often reflect alcohol's effect on the central nervous system (CNS). Deficits can range from a borderline low IQ to profound mental retardation, from subtle effects on memory, maturity and executive functioning to severe behavioral disturbances.
There are lifelong challenges for individuals exposed to alcohol in utero that significantly affect the individual's social and emotional functioning. It is important for families to be aware of the neurobehavioral profile of the child, that is how the child's thinking process, language skills, and brain function influence his/her behavior on a day-to-day basis. This awareness enables families to nurture a child's strengths while accommodating or intervening in areas of weaknesses.
Families may be better prepared for and able to cope with abnormal behavior that is related to the diagnosis, rather than becoming frustated if they interpret the behavior as the child's ill-intentions. Furthermore, such an awareness also enables professionals to acknowledge that these behaviors are not strictly the result of poor parenting skills. Individuals with FASD may have lifelong problems with learning and behavior. If disabilities are not addressed early, they may persist or result in more severe problems over time (e.g. school dropout, legal problems, and substance abuse).
Individuals with FASD may have delays in meeting expected developmental milestones or may have uneven development in the various domains. Some affected individuals may have significant cognitive disability, with the most extreme cases meeting criteria for mental retardation. Others may have borderline, low average or even normal IQ, and yet have poor life skills (e.g. self care, community functioning, and social skills). Core disabilities that are often experienced by individuals with FASD include attention problems, memory deficits, motor delays, executive function deficits, abnormal social skills, impairment and neurocognitive delays. They may have normal to low average expressive language skills, but poor comprehension and abstract reasoning, cause adverse implications in their ability to make judgments in day to day situations. Poor spatial skills and slow processing speed, may also make learning challenging.
The management of individuals with FASD depends on an understanding of their neurocognitive and developmental abilities as they apply to daily life. Parenting children with FASD requires a lot of patience, structure, and consistency. It is important to recognize and nurture the individual’s strength while helping him/her navigate the world in the face of their behavioral difficulties. Individuals with FASD have disabilities that affect the way they behave at home, in school and throughout the community. Just as we as a society provide ramps, glasses, and hearing aides, for those with physical disabilities, we must also advocate for appropriate accommodations for individuals with FASD. Parents, teachers, and care providers can and should play an active role in such advocacy efforts.
Some children with FASDs may have discernible developmental disabilities as early as infancy. Early intervention services are available for children 0-36 months of age who have significant developmental delay in one or more areas (e.g. language, motor skills, social skills). In the absence of documented delay or a specific diagnosis, the Individuals with Disability Education Act (IDEA) states that children younger than three years of age who are at risk of having developmental delays may be eligible for services. Even without a diagnosis, those who have delays in specific domains, can receive specific developmental services (e.g. occupational therapy for fine motor delays). Furthermore, children with FASD may display irritability, disrupted sleep-wake cycles, or problems processing sensory stimuli, and thus benefit from quiet, structured, and uncluttered environments.
In the preschool years, some children may be identified as having developmental disabilities related to language, cognition, or fine motor skills. They may be eligible for speech-language therapy, occupational therapy, or special education within the school system. Some preschoolers may exhibit hyperactivity, impulsivity, and inattentive behavior justifying their eligibility for educational, behavioral, and pharmacologic interventions related to ADHD. Some children may be indiscriminately friendly, and thus require education about appropriate social boundaries to both improve their social skills and for their own safety. Difficulty with emotional-behavioral regulation may manifest as tantrums that require appropriate emotional-behavioral and environmental supports. Children with FASD benefit from a structured environment where there are reasonable rules, practical routines, and clear expectations.
Some individuals may have more subtle neurodevelopmental weaknesses that can be overlooked until they are in school and begin having difficulty, when they are expected to learn by integrating information from a wide knowledge base and by generalizing from one learning situation to another. School based services are important for many individuals with FASD, especially those with learning disabilities, ADHD, or executive functioning deficits that create problems in their ability to function appropriately in the classroom setting. Many of these individuals may be mislabeled as lazy.
Parents of children with FASD often recognize these learning difficulties but need help presenting the issues to school authorities. Those who treat or provide case management services for individuals with FASD may need to make referrals for evaluations in order to assist in the attainment of appropriate educational interventions or accommodations. Such interventions can be paramount in preventing a child with FASD from dropping out of school, an all too common outcome for many students with FASD. These interventions may also have a significant impact in preserving the child's and the family's psychosocial and emotional health, by minimizing frustration over unrealistic learning expectations.
Successful FASD educational interventions are based on an individual's strengths and weaknesses, with the undrestanding that children with FASD can have inconsistent performance across settings, difficulty with generalizations, and difficulty with abstract thinking. They also may have problems with mathematics, sensory sensitivities and short term memory. In general, children with FASD benefit from teaching that is concrete and structured, but also modified according to their individual needs. Targeted interventions may be helpful for deficits in math in these individuals as well. Children with FASD may qualify for an Individualized Education Program (IEP) under Other Health Impaired (e.g. ADHD or Fetal Alcohol Syndrome), Specific Learning Disability (e.g. Mathematics Disorder), or Speech/Language Impairment.
There are research-based interventions for children with FASD regarding social skills, learning mathematics, and parent training. Researchers have found that children with FASD who had a 12-week children friendship training group showed significant improvement in their knowledge of appropriate social behavior when compared with children in the control group (O'Connor et al., 2007). Research through the Georgia Math Interactive Learning Experience (MILE) Program showed that certain teaching methods are effective in improving mathematics knowledge and skills in children with FASDs (Kable et al., 2007). Researchers in Seattle have demonstrated that an intensive 9-month individualized parent therapy program can improve parent effectiveness and reduce significant problem behaviors among school-age children with FASDs (Olson et al., 2008). Research is currently underway to develop more treatment strategies that can be useful to families and communities dealing with FASD.
Academic difficulties encountered during the early school years may continue or worsen in adolescence as success in school becomes more dependent on cumulative learning, organized thinking, and abstract reasoning. Some adolescents, especially those who lack appropriate support, begin to give up on school altogether. Therefore, early identification of learning difficulties or disabilities is imperative. In addition, some adolescents may begin to encounter problems related to impulsivity and poor judgment. Some struggle to maintain friendship while others begin participating in risky or inappropriate behaviors to gain acceptance among their peers. Adolescents with FASD are at higher risk for substance abuse given these factors, and efforts toward substance abuse prevention should include ensuring that they achieve success in academics, friendships, and family life. Furthermore they benefit from adequate preparation, support, apprenticeship, and advocacy as they transition from adolescense into the workforce and adult life.
Many individuals with FASD would benefit from the support of an advocate or mentor at home, in the workplace, and in the community. Job coaches, or supported employment, assisted living, transportation and other disability-related services are all options to consider. Assistance navigating the legal system is also required at times because the behavioral and cognitive challenges caused by FASDs make these individuals more prone to victimization, poor judgement, and poor cause-and-effect reasoning.
Several protective factors have been shown to improve functioning for individuals with prenatal alcohol exposure. These factors include a stable and nurturing environment, early diagnosis, absence of violence, stable home placements, and eligibility for social, developmental and educational services. (Streissguth, Barr, Kogan, & Bookstein, 1996). Conversely, risk factors for poor outcomes also have been identified, including multiple care giving placements, early or continued exposure to violence, and failure to qualify for disability services.