Management of Fetal Alcohol Spectrum Disorders (FASD)
Overview of the Diagnostic Process
The management of fetal alcohol syndrome (FAS) or fetal alcohol spectrum disorders (FASD) starts with a diagnostic evaluation that consists not only of making the diagnosis of FAS but that provides the family an understanding of the individual's unique medical and neurobehavioral profile. A typical FAS evaluation is undertaken by a team that consists of a pediatrician or developmental pediatrician, a psychologist, social worker and a speech-language pathologist and may include an occupational therapist and educational specialist. There are pediatricians who can diagnose FAS based on the Institute of Medicine (IOM) recommendations (Institute of Medicine, 1996) or the CDC FAS Guidelines for Referral and Diagnosis (CDC, 2004). However, often it is important to have a geneticist to evaluate for other genetic problems that may be co-morbid or that mimic the presentation of FAS.
Prenatal alcohol exposure can affect the face, growth, and central nervous system of the individual. It can also affect certain other organ systems and therefore appropriate medical referrals should be done as needed. For example, some individuals with FASD may have sensorineural hearing loss, vision problems or cardiac or neurologic abnormalities that may require the help of various other specialists. Failure to thrive and short stature may have to be evaluated by a gastroenterologist or endocrinologist, and may require guidance from a 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 FAS, several strategies may be helpful for individuals and their families beginning infancy to adulthood.
Assessment for Co-Morbid Conditions
In addition, while developmental and educational interventions and environmental accommodations are paramount, there may be co-morbid conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and anxiety that may necessitate psychopharmacologic intervention. In this case, child psychiatrists, developmental pediatricians, neurologists and/or other mental health professionals may have more involvement. An interdisciplinary approach often helps in the overall management of a child with a fetal alcohol spectrum disorder.
Management of Children with 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 and deficits can range from a somewhat low IQ to profound mental retardation, from subtle effects on memory, maturity and executive functioning to severe behavioral disability.
There are lifelong challenges for individuals exposed to alcohol in utero and these have a significant effect on the individual's social and emotional functioning. It is important for families to be aware of the neurobehavioral profile of a child, how a child's thinking process, language skills or brain function influence how a child behaves in day to day circumstances. This enables families to nurture a child's strengths while accommodating or intervening in areas of weaknesses.
It may help reinterpret behaviors as possibly brain-based rather than merely willful/ill-intended, and it enables professionals to understand that these behaviors cannot be accounted for merely by 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 secondary disabilities (e.g. school dropout, problems with the law and substance abuse) or in more severe problems over time.
Effects of Prenatal Alcohol Exposure on Developmental Outcomes
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 and meet criteria for mental retardation .Others may have borderline, low average or even normal IQ, and yet have poor life skills (self care/ community functioning/social skills). Core disabilities that are often experienced by individuals with FASD include attention problems, memory deficits, motor delays, executive function deficits, social skills, impairment and neurocognitive delays. They may have normal to low average expressive language skills but poorer comprehension and abstract reasoning, which may have implications in their ability to make judgments in day to day situations. They may have poorer spatial skills and slower speed of processing, making learning even more 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 a hidden disability that affects the way they behave in the home, school and community. Just as we as a society provide ramps, glasses, hearing aides, for those with visible physical disabilities, parents, teachers and care providers should advocate providing accommodations for individuals with FASD.
Some children with FASDs may have discernible developmental disabilities as early as infancy or toddler months. Early intervention services can be provided to those 0-36 months 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 3 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). Children with FASD may show irritability, disrupted sleep-wake cycles or have problems processing sensory stimuli and thus benefit from quiet, structured 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 and may be eligible for educational, behavioral and pharmacologic interventions related to ADHD. Some children may be indiscriminately friendly and require teaching about appropriate social boundaries. Difficulty with emotional-behavioral regulation may manifest as tantrums and 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 the school-age years, when they are expected to learn by integrating from a wide knowledge base and to generalize from one learning situation to another. School based services are important for many individuals with FASD because they may have specific learning disabilities or brain-based difficulties (ADHD or executive functioning deficits, etc.), that may create problems in their ability to function appropriately in the classroom setting. Many of these individuals may be misconstrued as lazy or not trying hard enough.
Parents of children with FASD often recognize these learning difficulties but need h
elp presenting these issues to school authorities. Individuals or groups who treat, provide care or case management for individuals with FASD may need to make referrals for these individuals to undergo evaluations that could help provide the appropriate educational interventions or accommodations. These interventions or accommodations may spell the difference between a child staying in or dropping out of school, the latter of which is particularly troublesome and considered as one of the sadly common secondary disabilities in children with FASD. These interventions may also make all the difference in assuring the child and families' psychosocial and emotional health and in minimizing the children's acting out due to frustration over the unrealistic learning expectations.
Educational interventions that have been found to be helpful in FASD are those that are based on an individual's strengths and weaknesses, keeping in mind that the child could have inconsistent performance across settings, difficulty with generalization and difficulty with abstract thinking. The child with FASD may have problems with mathematics, sensory sensitivities and short term memory. In general, children with FASD would benefit from teaching that is concrete, structured and that is modified according to the needs of the child. Targeted interventions may be helpful for the math deficits in these individuals. Some children with an FASD may qualify for an Individualized Education Program (IEP) under Other Health Impaired (e.g. ADHD or Fetal Alcohol Syndrome) while some may qualify under Specific Learning Disability (e.g. Mathematics Disorder) or Speech/Language Impairment.
There are research-based interventions for children with FASD as it applies to social skills, mathematics learning, 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 on 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.
All the academic difficulties encountered during school age years may continue to manifest or increase during the adolescent years, as learning becomes more dependent on cumulative learning, organized thinking, and abstract reasoning. Some adolescents, especially when not provided with the appropriate supports, 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 might struggle with just keeping their friends or in doing risky or inappropriate behaviors just to fit in. They are at higher risk for substance abuse given these particular factors; and therefore, efforts need to be geared towards substance abuse prevention, including ensuring that they achieve a reasonable amount of success in academics, friendship, and family life. They would benefit from support, apprenticeship, and advocacy as they transition into the workforce and should be provided with adequate preparation for adult life.
In general, individuals with FASD would benefit from the support of an advocate or mentor in the home, in the workplace and in the community. Adults with FASD may benefit from a job coach or supported employment, assisted living, transportation or other disability-related services. They could benefit from an advocate who could help navigate the legal system as the brain-based cognitive challenges experienced by individuals with FASD may make them 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 include a stable and nurturing environment, early diagnosis, absence of violence, stable home placements, and eligibility for social, developmental and educational services (i.e., developmental intervention or special education). (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.