The Autism Society Event and Education Recordings Archive

The proposed presentation will review the on-going active, population based surveillance program of autism spectrum disorders (ASD) conducted in South Carolina as part of the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network. Prevalence and associated characteristics of ASD among 47,726 eight year old children living in 23 counties in South Carolina will be discussed. Beyond epidemiology the presentation will review the current status of the Interagency Autism Coordinating Committee Research Matrix. As a group autism spectrum disorders (ASD) were thought to be rare. Recent increases in administrative counts of ASD since the early 1990s have stirred public controversy and concern. Special education administrative counts in the United States, for example, reported the total number of public school children served under the autism category in 1994-95 to be 22, 445 and by 2003-2004 that number was reported to be 140,254. Despite the obvious rise in special education services to students with autism several problems arise in using administrative data as a means to determine ASD prevalence.  The complex nature of ASD and the lack of medical tests or biological markers for early identification pose difficulties in measuring the prevalence rate of ASD. There is much to learn about prevalence of ASD in the United States, particularly since the widely accepted diagnostic criteria have broadened to consider autism as a spectrum condition with people affected to varying degrees of severity. However studies of prevalence need a base population of sufficient size, a defined population, a systematic and standardized screening of the total population, focus on a specific age group, and a standardized diagnostic procedure to determine status. Criteria administrative counts and previous studies of autism prevalence lacked.

In response to the effort of the autism communities across the country, Congress enacted the Children’s Health Act of 2000. One outcome of this Act was the Centers for Disease Control and Prevention (CDC) established a network of state-based programs designed to create ongoing monitoring for ASDs. This consortium is known as the Autism and Developmental Disabilities Monitoring Network (ADDM). South Carolina was one of the 14 sites chosen by the CDC to be part of the ADDM network.  SC ADDM is located at the Medical University of South Carolina. The methodology used by the ADDM network meets the five criteria noted above and continues to use this gold standard with large birth cohorts over a significant time period.

The proposed presentation will review the current results of this ongoing active population-based surveillance program of over 47,726 eight year olds conducted in South Carolina as part of the CDC Autism and Developmental Disabilities Monitoring Network. Results include prevalence and characteristics of 8 year old children with ASD involving half the state of South Carolina.

In addition  the Children’s Health Act of 2000 also mandated the establishment of an Interagency Autism Coordinating Committee (IACC) to organize autism research within the Department of Health and Human Services. Congress, in 2003, requested the IACC develop an explicit set of autism research goals and activities covering several years, a research roadmap. This led the IACC to convene a panel of scientists to assess the field of autism research and develop the autism research matrix, a guide to autism research planning. The autism research matrix presents levels of ASD research and develops a 10 year plan to examine causes and best treatment options for ASD. Eight areas of the research matrix were identified. The proposed presentation discusses in detail one section of the matrix, epidemiology, by reviewing the first six years of the South Carolina ADDM program.  Time will also be given to review the current status of autism research based on the matrix beyond epidemiology, including genetics, the role of the environment, neuroscience, screening, early intervention research, specific treatments, and school and community interventions.

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