Survey of Pathways to Diagnosis and Services
The Survey of Pathways to Diagnosis and Services is a nationally representative survey about children with special health care needs aged 6 to 17 years old ever diagnosed with autism spectrum disorder, intellectual disability, or developmental delay. Parents and guardians 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 the developmental problems, and other parental concerns or perspectives. Results from the Pathways survey may help researchers and policymakers better understand the processes by which these learning and developmental conditions are diagnosed and treated. The 2011 survey was conducted as a follow-up to the 2009-2010 National Survey of Children with Special Health Care Needs.
- Sponsor: This project was sponsored by the National Institute of Mental Health (NIMH) of the National Institutes of Health (NIH), with funds available from the American Recovery and Reinvestment Act of 2009 (ARRA) (Public Law 111-5).
- Federal agencies: NIMH, NCHS, the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), and CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) are the federal agencies that were involved in the survey planning process. A committee of federal and academic experts identified key research questions and crafted the content of the questionnaire.
- Period of data collection: February 2011 – June 2011.
- Sample size: 4,032 children.
- Sample frame: Children ages 6-17 years old whose parent or guardian completed the 2009-2010 National Survey of Children with Special Health Care Needs and reported that they had once been told by a doctor or other health care provider that the child had developmental delay, autism spectrum disorder, or intellectual disability.
- Data collection: Data were collected via telephone (landline and cell phone) and mailed questionnaire. Data collection was conducted under contract with NORC at the University of Chicago. Strict confidentiality and privacy regulations apply to all contract and federal project staff for all data. For more information, visit the NCHS confidentiality policy.
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- Frequently Asked Questions [PDF – 264 KB]
Please read the FAQs carefully and completely before analyzing these data.
- Survey Instrument
- Notice of Release of Revised Variables
- List of Variables and Frequency Counts [PDF – 534 KB]
- Sample SAS Program Files
- SAS Variable Format Files
- Imputed Data for Demographic Variables with Missing Values