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Addressing parental concerns at the initial diagnosis of an autism spectrum disorder
Authors:Mario J. Gaspar de Alba  James W. Bodfish
Affiliation:1. Center for Development and Learning, CB# 7255, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7255, USA;2. Department of Pediatrics, 220 Medical School Wing E, CB# 7220, 110E N Medical Drive, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC 27599-7220, USA;3. Department of Psychiatry, University of North Carolina at Chapel Hill School of Medicine, CB# 7160, Chapel Hill, NC 27599-7160, USA;4. Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill School of Medicine, CB# 3366, 101 Manning Drive, Chapel Hill, NC 27599-7160, USA;1. Center for Autism and Related Disorders, Kennedy Krieger Institute, 3901 Greenspring Avenue, Baltimore, MD, 21211, USA;2. Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, 733 N Broadway, Baltimore, MD, 21205, USA;3. Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Baltimore, MD, 21205, USA;4. Department of Neuropsychology, Kennedy Krieger Institute, 1750 E Fairmount Ave., Baltimore, MD, 20231, USA;5. Autism Assessment, Research, Treatment, and Service Center, Rush University, 1645 W. Jackson Blvd., Suite 603, Chicago, IL, 60612, USA;6. School of Psychiatry and Behavioral Sciences, Rush University, 1645 W. Jackson Blvd., Suite 603, Chicago, IL, 60612, USA;1. Department of Psychiatry, Washington University in St Louis, St Louis, MO, USA;2. Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King''s College London, London, UK
Abstract:The core deficits in autism spectrum disorders (ASDs) include socialization, communication, and the presence of repetitive, stereotypical interests and behaviors. In addition to these core problems the autism spectrum includes a variety of possible developmental delays, intellectual disabilities, medical issues, and co-morbid psychiatric disorders. As each child may present with a unique set of difficulties, it may be difficult for clinicians to adequately address each families concerns at the time of diagnosis. The object of this study was to assess what problems were of foremost important to parents at the time of their child's ASD diagnosis and to determine how well they felt those concerns were addressed during the diagnostic process. Four-hundred and thirty-eight parents of children with an ASD completed web-based surveys collecting demographic information and assessing areas of concern and how well those concerns were addressed at diagnosis. At the time of diagnosis, core deficits were of most important to respondents but were considered well addressed only about half of the time. Also important was discussing information about treatments options with the diagnosing clinician. Clinicians could better address the core deficits in autism and their treatment options at the time they make an ASD diagnosis.
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