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Centers for Disease Control and Prevention's (CDC) National Centers on Birth Defects and Developmental Disabilities (NCBDDD) and Autism Speaks: Workshop on U.S. Data to Evaluate Changes in the Prevalence of the Autism Spectrum Disorders

Tuesday, February 1, 2011
8:00 a.m. to 5:30 p.m. Eastern
Tom Harkin Global Communications Center
1600 Clifton Road, N.E.
Atlanta, Georgia


The purpose of the workshop was to bring together scientists and stakeholders in the field of autism surveillance and research to:

  • Summarize where we are in our current understanding of changes in ASD prevalence in the US;
  • Learn from different perspectives, including experts who have studied prevalence changes among other complex conditions;
  • Share ideas for the field to move forward in understanding trends in ASD prevalence.
  • Stimulate further work to understand the multiple reasons behind increasing ASD prevalence in the U.S.

The key suggestions for framing the path forward centered around the following themes:

  • Increase collaboration efforts
  • Better utilize existing data
  • Use data on prevalence and characteristics of individuals with an ASD to better inform service and support efforts
  • Implement new types of data collection and studies

It is hoped that the information, research, and opinions shared during this workshop will add to the knowledge about ASD prevalence and encourage further work among public and private groups to understand the multiple factors influencing increasing ASD prevalence in the U.S. and beyond.

CDC is moving forward and is addressing several of the panelist suggestions. For example, CDC:

  • Continues to monitor the prevalence of ASDs among 8-year-old children through the multi-site collaboration of the Autism and Developmental Disabilities Monitoring (ADDM) Network. An updated prevalence report is expected this Spring and ongoing data collection is underway for another cohort of children in areas of the United States.
  • Has begun projects in 6 ADDM Network sites to determine the prevalence of ASDs among children at 4 years of age.
  • Has supported 2 projects (California and Florida) currently underway to examine the prevalence of ASDs in young children with one study conducting community-based screening for ASDs in pediatric practices.
  • Is working with NIH and Autism Speaks to support a project by the University of Minnesota through the Association of University Centers on Disabilities (AUCD) to study autism in a Minnesota Somali community to follow-up concerns about higher autism prevalence than in other communities.
  • Has implemented analyses related to how specific identification and risk factors in the population have changed and whether they could have a significant impact on increasing ASD prevalence.
    • An analysis was completed and a paper published indicating that population changes in select perinatal factors such as low birth weight and gestational age have had a minimal effect on ASD prevalence changes reported in the ADDM Network (Schieve et al., 2011).
    • Several other analyses by ADDM Network investigators examining other identification and risk factors in relation to ASD prevalence change are underway.
  • Has partnered with Autism Speaks to build on the ADDM Network infrastructure to evaluate the completeness of ASD prevalence estimates. Autism Speaks is funding a project in the SC ADDM site through the Medical University of South Carolina to add community screening and assessment to the existing ADDM record-review surveillance method.
  • Continues to work as part of the Interagency Autism Coordinating Committee (IACC) to identify and implement a Strategic Plan for Autism Research coordinated among public and private organizations.
  • Is conducting one of the largest studies in the United States to help identify factors that may put children at risk. This study, being conducted across a 6 site network known as the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), is called SEED, the Study to Explore Early Development. SEED is looking at numerous risk factors of autism such as genetics, environmental exposures, pregnancy factors, and behavioral factors. The study enrollment is on schedule, and first reports are expected from SEED later this year.
  • Continues to work with the community to increase awareness of early signs of ASDs and other developmental disabilities. Our "Learn the Signs. Act Early." program is working to address critical gaps in early identification of autism and other developmental disabilities in two ways:
    • First, we know that all parents play a critical role in monitoring their children's developmental milestones. Our program offers free online resources for parents to help them do that. We also have resources for health professionals and early childhood teachers.
    • Second, we are working with representatives from public health, medicine, education, and advocates in states to improve early identification, screening, and referral practices so children and their families can access the services and supports.

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