Abstract
As of 1999, only 36 instances of individuals with both Down syndrome and Autism Spectrum Disorder (DS-ASD) were described in the medical literature. Many conflating factors presumably delayed or prevented the accurate diagnosis of DS-ASD at the time, though the most striking barrier was a persistent belief in the medical community that the two conditions did not or could not coexist. Extensive work exists delineating the nature and impact of parental stress when a child is born with either Down syndrome or Autism Spectrum Disorder. Within these studies, cohorts of parents of children with either disability are frequently compared to each other, yet investigations into the experience of parents of the dually diagnosed are absent. We interviewed six parents to better understand the diagnostic process and the challenges and joys involved when raising a child with DS-ASD. We coded interviews in ATLAS.ti (version 7.0) and analyzed for themes. We found that parents were usually the ones to suggest their child had autism and most were able to find information about the dual diagnosis from either their doctor or their own Internet research. While the diagnosis of Down syndrome often came as a shock, the autism diagnosis brought a sense of validation to parents who had noticed differences in their child for years. Five of the six parents expressed feelings of alienation from parent or child groups that focused on solely one diagnosis. The formal diagnosis of autism created access to new services, though utilization varied. This study suggests the importance of accurate, timely diagnosis and appropriate support services for child and family.