Diagnostic and Health Care Experiences of Children with Autism Spectrum Disorder, Intellectual Disability, or Developmental Delay: An Introduction to New Nationally Representative Survey Data

Background:  From February-May 2011, the National Center for Health Statistics fielded the first ever Survey of Pathways to Diagnosis and Services, a nationally representative survey about children with autism spectrum disorder, intellectual disability, or developmental delay.  The Pathways study examines the emergence of symptoms; the history of diagnoses; treatments and interventions used to address the problem; and current behavioral, diagnostic, and functional status.  The Pathways study was sponsored and co-led by NIH’s National Institute of Mental Health, using funds available from the American Recovery and Reinvestment Act of 2009. 

Objectives:  The purpose of this presentation is to describe the design and content of the survey, present key findings about the health care and diagnostic history of children with developmental conditions, and describe how researchers can access the data files to conduct their own analyses.

Methods:  Follow-up interviews were conducted with parents and guardians who previously participated in the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) and who reported that their child had ever been diagnosed with at least one of the three developmental conditions.  Parents who participated in the Pathways survey completed a telephone interview and were sent a self-administered mailed questionnaire, which consists of two previously tested and widely used instruments: the Children’s Social Behavior Questionnaire, and the Strengths and Difficulties Questionnaire.  Parents who did not send back the mail questionnaire were prompted by telephone to verify their mailing address and were given the option to complete the questionnaire on the phone.

Results:  We were able to complete telephone interviews from 4,056 parents of CSHCN with these relatively rare but increasingly identified conditions.  The interview completion rate exceeded 70%.  Furthermore, of the parents who participated in the phone interview, almost 3,000 mailed back their self-administered questionnaire or completed the questionnaire through our telephone prompting efforts.

Conclusions:  The Pathways study  provides the largest ever nationally representative survey data on the health care and diagnostic history of CSHCN identified as having (or having had) autism spectrum disorder, intellectual disability, and/or developmental delay.  Data files from this survey will be available to the public online at no charge.   Conference participants will have an opportunity to learn about this new survey and its key findings, and be able to interact with the survey developers.  Our goal is to provide information to assist other researchers in utilizing Pathways survey data and to gain knowledge from the Pathways study in an effort to generate and promote more research and better interventions and services for CSHCN with developmental conditions.