Diagnostic and health care experiences of children with past but not current diagnosis of autism spectrum disorder
The goal of the 2011 Survey of Pathways to Diagnosis and Services was to explore the health care and diagnostic history of children with special health care needs (CSHCN) identified as having (or having had) autism spectrum disorder (ASD), intellectual disability, and/or developmental delay. The National Center for Health Statistics (NCHS) and National Institute of Mental Health (NIMH) worked in partnership to develop and deploy a telephone interview and mail questionnaire to gather information about how children aged 6 to 17 years who were ever diagnosed with these conditions came to be diagnosed in the past, their current diagnostic status, and the types of services the children have received for the condition(s).
This presentation will use data from the Pathways survey to better understand results from the 2007 National Survey of Children’s Health, which showed that approximately one in 100 children aged 3 to 17 years has ASD and that nearly as many children (approximately one in 150) reportedly had once been diagnosed with ASD but did not have the condition at the time of the interview. Estimates for CSHCN with a current diagnosis of ASD will be compared with estimates for CSHCN who have a past but not current diagnosis of ASD. The survey methods and other key findings from the survey will also be presented, and discussion will focus on the difficulties in identifying children with ASD through parent surveys.
Dr. Stephen Blumberg is a senior scientist at the National Center for Health Statistics, Centers for Disease Control and Prevention. He is the lead statistician for the State and Local Area Integrated Telephone Survey. This random-digit-dial survey mechanism regularly fields some of the world's largest telephone surveys on children’s health, health care, and well being, including the National Survey of Children with Special Health Care Needs and the National Survey of Children’s Health.
His research interests span a wide range of topics, from survey strategies to identify vulnerable populations to the prevalence of wireless-only households and the impact of cell phones on coverage bias for telephone surveys. Dr. Blumberg is currently President of the Washington-Baltimore chapter of AAPOR, the American Association for Public Opinion Research.