Do diagnostic and health care experiences relate to what parents think of their child's autism? An analysis from the Survey of Pathways to Diagnosis and Services

The Survey of Pathways to Diagnosis and Services (“Pathways”) is the largest national survey on the health care and diagnostic history of children with special health care needs (CSHCN) who have been identified as having (or having had) autism spectrum disorder, intellectual disability, and/or developmental delay. Pathways is a follow-up survey to the 2009-2010 National Survey of Children with Special Health Care Needs, and was conducted by the National Center for Health Statistics using the State and Local Area Integrated Telephone Survey mechanism, and co-led by NIH's National Institute of Mental Health. Over 4,000 parents of CSHCN aged 6-17 years and with at least one of these developmental conditions were interviewed via telephone.

This analysis focuses on children who currently have autism (n=1422); and it examines how their diagnostic experience, frequency of service use, and types of services used relate to various parental perceptions of their child's conditions, controlling for socio-economic and demographic characteristics. Measures of diagnostic experience include the type of health care provider who diagnosed the condition, and whether any health care provider told the parent that the child did not have autism. Measures of parent perception examined in this study include whether the parent believes their child's problems can be prevented or decreased with treatment, what causes the condition, and how the parent feels when they think about their child's condition. This presentation will be useful to health care providers and program coordinators/staff who work with families that have children with autism.