Access and Use Nationally Representative Data on Children with Autism Spectrum Disorders

In recognition of Autism Awareness Day and Month 2012, the National Data Resource Center for Child & Adolescent Health (DRC) wants you to know about publicly available data and resources on U.S. children with autism spectrum disorders (ASD). For example, did you know that according to the most recent 2007 National Survey of Children's Health an estimated 1 in 100 (1.0%) of U.S. children age 2-17 years have ASD?

The DRC analyzes and disseminates a wide range of population-based, parent-reported data on child health and quality of care, including data on children with ASD, from both the National Survey of Children's Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN). An array of child health resources as well as technical assistance and data sets are additionally available through the DRC. Visit the DRC website at www.childhealthdata.org to access and use the full breadth of child health data and resources available.

New Data on Children with Special Health Care Needs & ASD 

The recently released DRC data brief, National Profile of Children with Special Health Care Needs and Autism Spectrum Disorders, highlights findings

from the 2009/10 NS-CSHCN and the 2007 NSCH. Findings from this data brief in addition to general information about how to access and use 2009/10 NS-CSHCN data are provided in the State Public Health Autism Resource Center Technical Assistance  presentation made by Dr. Christina Bethell on March 21, 2012. View the following findings and others on the DRC website: 

• Children with special health care needs (CSHCN) experience at least one type of ongoing condition that results in an above routine need for health and related services. 15.1% of U.S. children age 0-17 years have special health care needs.
• According to findings from the 2007 NSCH and the 2009/10 NS-CSHCN, 4.8% to 7.9% of U.S. CSHCN age 2-17 years have a current ASD.

  Click on the map to view ASD prevalence among CSHCN in your state.

• Approximately four in five (80.6%) of CSHCN with ASD age 2-17 years are boys according to 2009/10 NS-CSHCN data.
• 71.6% of CSHCN with ASD were diagnosed between 0-5 years of age based on 2009/10 NS-CSHCN data. 
• Based on 2009/10 NS-CSHCN data, more than two-thirds (68.7%) of CSHCN with ASD experience conditions that consistently and often affect their daily activities. 
• This is enough children to fill over 15,000 school buses spanning 115 miles when placed front to back. 
• Over half (57.1%) of CSHCN with ASD had conditions that caused their family members to cut back or stop working compared to 21.6% of CSHCN without ASD according to 2009/10 NS-CSHCN data.
• That is approximately 900,000 family members of CSHCN with ASD, close to twice the population of Vermont, who left or reduced their time in the workforce.
• Among CSHCN age 2-17 years who received ongoing, comprehensive care within a medical home, 4.4% had ASD; while 10.6% of CSHCN who did not receive care within a medical home had ASD based on 2009/10 NS-CSHCN data.
• According to 2007 NSCH data, only 12.9% of CSHCN with ASD reported as severe were found to meet the following minimum quality of care criteria: (1) adequate health insurance coverage; (2) receipt of care within a medical home; and (3) at least one preventive medical care visit in the past 12 months.