Christina Bethell, PhD, MPH, MBA, professor at the Johns Hopkins Bloomberg School of Public Health and director of the Child & Adolescent Health Measurement Initiative (CAHMI), is available to discuss a new database portal that makes findings from a survey of more than 4,000 parents of children diagnosed with Autism Spectrum Disorder (ASD) and other learning disabilities available for the first time in a user-friendly format. The extensive survey includes findings based on questions about the emergence of symptoms and diagnosis, and the use of medication, health care and education services. The database should be of interest to parents, journalists, researchers and policymakers interested in learning more about children with ASD and their families, and supporting ongoing advocacy efforts.
As of 2014, the Centers for Disease Control and Prevention (CDC) estimated that 1 in 68 children has been identified with ASD. This was roughly 30 percent higher than 2012, when the CDC estimated that 1 in 88 children (11.3 per 1,000 eight year olds) being identified with ASD.
Bethell and her team worked with Autism Speaks to develop the database, which makes findings from the 2011 Survey of Pathways to Diagnosis and Services easily accessible. The survey consisted of 4,032 telephone interviews with parents of children ages six to 17 who were identified by the 2009-2010 National Survey of Children with Special Health Care Needs as ever being diagnosed with ASD, developmental delay (DD), or intellectual disability (ID).*
The user-friendly database of survey findings, housed on CAHMI’s Data Resource Center for Child & Adolescent Health website, includes information on:
• Early behavioral signs• Emergence of symptoms• Developmental screening• Early intervention/treatment and referrals• Use of health care services and providers• Adequacy of school and provider services• Use of medication• Child’s functioning, strengths and difficulties • Parental views and safety concerns
The database is easy to search:
1) Start at http://www.childhealthdata.org/browse/survey2) Select “Survey of Pathways to Diagnosis and Services”3) Select a Starting Point/Topic4) Select a question within that topic to see data tables and charts
Learn more about the survey itself at: http://www.childhealthdata.org/learn/pathways.
Bethell can discuss the survey findings and how others can access the data to answer their own questions about ASD and other disabilities. Bethell, whose research focus is patient-centered health systems and measurement, has published articles on children with special health care needs and autism, including “Health Care Quality for Children: The Position of Autism Spectrum Disorder” in the 2014 “The Comprehensive Guide to Autism.”
For more information, please contact Caitlin Murphy at firstname.lastname@example.org.
*The 2009/10 National Survey of Children with Special Health Care Needs was supported by the Maternal and Child Health Bureau, part of the Health Resources and Services Administration. The 2011 Survey of Pathways to Diagnosis and Services was supported by the National Institute of Mental Health. The National Center for Health Statistics, part of the Centers for Disease Control and Prevention, conducted data collection for both surveys.