Often parents ask: Why bother getting a diagnosis? Differential diagnoses related to behavioral difficulties and the brain are just as crucial for successful outcomes as those related to physical health. A correct diagnosis of FASD leads to better educational outcomes, job prospects, and overall mental health than otherwise possible. We know that determining the type of cancer is critical to the determination of the kind of chemotherapy or other treatment; differentiation of the cause of behavioral problems is no less important than in this example. If a child is diagnosed with ADHD (often the first diagnosis our loved ones receive), the usual interventions, such as medication, are not necessarily helpful to those with an FASD, or even the dosage may not be productive since brain differences can affect how medications are metabolized. There are many overlapping characterstics between FASD and other conditions.
Parents often realize that "typical" parenting techniques do not remedy the behavioral challenges of those with a missing diagnosis or a misdiagnosis. Once an accurate diagnosis is obtained, there are interventions that work, but they are not the ones we reflexively consider.
Others question seeking an FASD diagnosis with the statement that "It doesn't matter, there isn't help anyway." That is not true; there may not be as many evidence-based interventions as for other diagnoses, but until more are diagnosed with an FASD, there is limited focus on developing those interventions which is a disadvantage for all. Furthermore, this assertion implies that there is no hope for those with an FASD. That is absolutely not true! As with all problems, early intervention is related to a positive outcome. For a more in-depth discussion of this, see FASD: Thirty Reasons Why Early Identification Matters
And many adults with FASD, often regardless of when a diagnosis was obtained, are proof that diagnosis does matter.
Diagnostic capacity in North Carolina is limited. While there may be some developmental pediatricians, psychiatrists, or psychologists willing to diagnose an individual with an FASD, those are few in number. NCFASD Informed has obtained the following information about practitioners/sites in the state with the ability to diagnose. The list will be expanded as other possibilities are confirmed.
Please note what has come to our attention several times in the last several years when consulting with families, school staff, and MCO/LMEs: If the child with suspected exposure to alcohol in utero (or a child who does not respond to traditional interventions) is either in foster care or has been adopted, there may be information in the records that states the diagnosis, but it has been passed over for whatever reason. If so, the specific FASD diagnostic code needs to be entered into whatever medical and school records that exist as a primary diagnosis. This action gives the diagnosis the attention it deserves and also allows access to appropriate services such as the Innovations Waiver. Additionally, the concerned parent, caretaker, etc. can educate themselves about what this diagnosis means and how the environment needs to be structured and what interventions will be beneficial and share that information with others.
Being trauma-informed is important, but the study below shows that the over-emphasis on trauma as being of of primary importance in children, especially when we are looking at estimates up to 80% of children in care having an FASD, may be misguided. The researchers indicate that the impact of traumatic childhood experiences on the cognitive and behavioral functioning of children with FASD may be very subtle, especially in terms of cognitive functioning. Clinicians and other professionals should be aware that a history of neglect or abuse does not appear to be a better explanation for cognitive dysfunction or behavioral difficulties than prenatal alcohol exposure. Where children have a history of both exposures, they should primarily be treated as children with FASD, and provided appropriate support and interventions specifically designed for FASD.
Chad Haldeman-Englert, MD
William Allen, MD
Fullerton Genetics Center
9 Vanderbilt Park Drive
Asheville, NC 28803
Fullerton Genetics offers diagnostic appointments for Fetal Alcohol Spectrum Disorders (children and adults). The team consists of a genetic counselor and medical geneticist.
Yasmin Senturias, MD
Developmental & Behavioral Pediatrics
of the Carolinas
2608 E. Seventh St., Charlotte, NC 28204