Ten-year experience of fetal alcohol spectrum disorder; diagnostic and resource challenges in Indigenous children

Background: Although fetal alcohol spectrum disorder (FASD) can have a disproportionate impact in some Indigenous communities, there is a paucity of literature on its epidemiology. Objective: To characterize the epidemiology of Indigenous individuals under the age of 18 years who were diagnosed with FASD at Anishnawbe Health Toronto over a 10-year period. Methods: Children who were assessed at Anishnawbe Health Toronto from 2002 to 2012 and met the 2005 criteria for FASD were included. The multidisciplinary team assessed neurodevelopmental abnormalities, FASD facial features and growth parameters and enquired about maternal alcohol consumption, current custody and involvement with the criminal justice system. Results: Forty-nine children were diagnosed with FASD. None of these had full fetal alcohol syndrome (FAS); 12 were diagnosed as partial FAS and 37 with alcohol-related neurodevelopmental disorder (ARND). Thirty-five were male and the median age at diagnosis was 9 years. Nineteen were wards of children's services, and 8 were living with adoptive parents. All children had abnormalities in psychometric testing. Other issues included: behavioural issues (80%); learning disabilities (63%); attention deficit hyperactivity disorder (43%); developmental delay (14%); involvement with the criminal justice system (12%) and alcohol abuse (10%). The morbidity and impairment for ARND was higher on almost every measurement compared with partial FAS. Conclusions: FASD is a preventable cause of lifelong significant morbidity to Indigenous children with a high proportion of children needing foster-care services and involvement with the criminal justice system at an early age. Although ARND is difficult to diagnose, it can result in significant morbidity. Additional resources for culturally sensitive primary prevention and early diagnosis of FASD for Indigenous families are required.