The set of conditions under the FASD umbrella share 2 common features: timing of onset as prenatal developmental injury and significant severity of impact that justifies use of the word “disorder.”
Beyond that common base, the individual’s version depends on the presence and mix of a wide range of variables. These include the frequency, timing, and amount of alcohol exposure, and if other substances also were used, as well as maternal nutrition and health during pregnancy. Medical or neurodevelopmental defects may disrupt labor and delivery, with further impact related to the many potential problems of prematurity—birth injury at term presenting as early-onset seizures or neuromuscular deficits such as cerebral palsy.
FASDs are often associated with severe family dysfunction, bringing complications of neglect and/or abuse, including direct harm to the child, as well as exposure to abnormal and inappropriate models of behavior and parenting style.
Given this wide range of variability to individual stories, there is no specific treatment for FASDs as a diagnostic condition. The management plan will depend entirely on the problems seen in that individual in the context of the standards of care and the available resources in the community. For most people with FASDs, the result is a chronic series of problems that shift over time in number, type, and priority.
The single resource of use to most people with significant problems associated with FASDs is case management/care coordination, ideally provided by someone experienced with FASDs and the impact of emotional trauma. Types of Case Managers/Care Coordinators for FASDs
The role of the case manager/care coordinator can be filled by a wide variety of individuals from a variety of service systems. A newborn with an FASD is more likely to require special medical attention, as well as close monitoring by early infant developmental specialists. As with infants and children, neonates may be also identified by child protection services as at-risk of neglect and/or harm.Education Systems
Children aged 3 and older come into the view of education systems, with continued involvement through childhood into adolescence and transition to adulthood. The neurobehavioral consequences of FASDs include variable mixes of cognitive, executive, and language problems, with resulting problems that can impair performance in academics, behavior, and/or communication. Which of these issues is primary may determine the appropriate case manager/care coordinator. If medical or developmental issues are being monitored, close collaboration may be needed among several managers.Mental Health
Mental health specialists may be consulted for behavior problems or emerging mental illness, often severely complicated by complex emotional trauma. By adulthood, the individual may have moved through a wide variety of service providers and teams of professionals who have made individual and group decisions about their lives. When done well, the decisions are made with close collaboration and communication among all the players. Unfortunately, more often the sequences of service are disconnected, with poor communication or conflicting paradigms of illness and dysfunction interfering and interacting to obstruct good outcome.Legal Professionals
When there are legal and corrections issues, another layer of management becomes involved, with priorities very different from those of medical or mental health providers. The need for close communication is even more important, especially since legal problems often extend out for years and include transition to adult systems of care and oversight.Primary Goals of Case Management/Care Coordination
An effective clinical approach to FASDs, especially at the point of first diagnosis, should recognize the likely need for lifelong case management/care coordination. Primary goals include:
- Identification of an accurate problem list, with regular adjustments and updates
- Facilitation of clear communication between collaborating providers to avoid conflicting treatments or models of care
- Awareness of the inevitable need for transition to a new case manager/care coordinator as the client ages, bringing changes to the priority of problems and the needed providers and systems