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Survey of Pathways to Diagnosis and Services

The Survey of Pathways to Diagnosis and Services (Pathways) was conducted in 2011 as a follow-up to the 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN). Adding to the rich information available in the NS-CSHCN, the Pathways survey took a closer look at the emergence of symptoms and diagnosis, and the use of medication, health care and education services. The Pathways survey provides information about parental concerns and perceptions, the process by which the child was diagnosed, access to care, service needs and use, functional limitations, and strengths and difficulties for children with ASD, DD or ID.

The Pathways survey was sponsored by the National Institute of Mental Health (NIMH) of the National Institutes of Health (NIH). The National Center for Health Statistics (NCHS) of the Centers for Disease Control and Prevention (CDC) oversaw the sampling, survey implementation, and data management for the survey. Pathways was a nationally representative survey of children with special health care needs age 6-17 years who were identified by the 2009/10 NS-CSHCN as ever being diagnosed with autism spectrum disorder (ASD), developmental delay (DD), or intellectual disability (ID).

Fast-track your use of Pathways data:

The Data Resource Center (DRC) has evaluated and produced results from the Pathways survey so that it is relevant to parents, researchers, community health providers, and anyone interested in autism spectrum disorder, developmental delay, or intellectual disability. The DRC website provides point-and click access to results from the survey in tabular and graphical formats for the nation and 4 Census Regions. The national level data can be further refined to assess differences race/ethnicity, income, current condition status, health insurance type and other important demographic characteristics.

The Pathways survey at a glance​​

Survey Design and Sponsorship National Institute of Mental Health at the National Institute for Health; Maternal and Child Health Bureau at the Health Resources and Services Administration in partnership with National Center for Health Statistics at the Centers for Disease Control
Data Collection National Center for Health Statistics at the Centers for Disease Control
Geographic areas Nationwide, 4 regions (Midwest, South, Northeast, West)
Periodicity Administered one time in 2011 as a follow-back supplement to the 2009/10 NS-CSHCN
Population sampled Children with special health care needs (CSHCN) ages 6-17 years who were ever diagnosed with Autism Spectrum Disorder, intellectual disability, or developmental delay in the 2009/10 NS-CSHCN
Sample size range   Around 4,000
Representative  Weighted to be representative of the US population of non-institutionalized children ages 6-17
Topics  Parents were asked about the emergence of symptoms, the context of the original diagnoses, the providers who made the diagnoses, the child's current diagnostic status, the types of clinical treatments/interventions and educational services used to address developmental delays, and other parental concerns or perspectives.