Misdiagnosis and missed diagnoses in foster and adopted children with prenatal alcohol exposure

Abstract

Objective: The purpose of this article is to assess the rate of misdiagnosis and missed diagnoses of fetal alcohol spectrum disorders (FASD) among a population of foster and adopted youth referred to a children's mental health center.

Methods: Data were collected from a sample of 547 children who underwent a comprehensive multidisciplinary diagnostic evaluation. Utilizing current diagnostic criteria, children were diagnosed, as appropriate, with fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder, or alcohol-related birth defects. Changes in rates of alcohol exposure-related diagnoses and cooccurring mental health disorders pre- and postassessment were analyzed by using McNemar's test for dependent proportions.

Results: Among 156 children and adolescents who met criteria for a diagnosis within the fetal alcohol spectrum, 125 had never been diagnosed as affected by prenatal alcohol exposure, a missed diagnosis rate of 80.1%. Of the 31 who had been recognized before referral as affected by prenatal alcohol exposure, 10 children's FASD diagnoses were changed within the spectrum, representing a misdiagnosis rate of 6.4%. The remaining 21 (13.5%) children's diagnoses stayed the same. There also were significant changes in the rate of mental health diagnosis, and learning disorders, communication disorders, and intellectual disability, objective signs of neurocognitive damage, were not recognized in a significant number of children with FASD.

Conclusions: Within this clinical sample, 86.5% of youth with FASD had never been previously diagnosed or had been misdiagnosed. These high rates of missed diagnoses and misdiagnosis have significant implications for intervention and therapeutic services.

Keywords: alcohol related neurodevelopmental disorder; diagnosis; fetal alcohol spectrum disorders; fetal alcohol syndrome; neurodevelopmental disorder with prenatal alcohol exposure.