New Jersey Autism Study is a public health monitoring system established and maintained by researchers at Rutgers- New Jersey Medical School, in cooperation with the Centers for Disease Control and Prevention (CDC) and the New Jersey Departments of Health and Education. The aims of the New Jersey Autism Study are to provide the most accurate information regarding the occurrence and expression of Autism Spectrum Disorder (ASD) over time and to identify disparities in the identification or treatment of ASD. Findings from this system are also studied in conjunction with data on other developmental disorders and in reference to other health information to advance the understanding of ASD risk factors, subtypes and trajectories.
New Jersey Autism Study conducts a rigorous two-phase ASD ascertainment process developed by CDC, based on systematic review of health and education records, followed by analysis and independent case-determination by experts, using standard diagnostic criteria. This approach allows the development of reliable population-based ASD estimates and a robust array of subject-specific information with minimal burden on affected families.
ASD prevalence monitoring is conducted in Hudson, Essex, Union and Ocean counties New Jersey, a diverse area within the largest US metropolitan region. ASD monitoring is conducted among well-defined cohorts of 8-year-old children. ASD monitoring has been completed for individuals born in 1992, 1994, 1998, 2000, 2002, using the same definions, methods and preocedures across all cycles of monitoring.
ASD prevalence findings for our 1992 and 1994 cohorts showed overall ASD preavalence in New Jersey of 9.9 and 10.6 per 1,000, respectively. ASD prevalence for the 1998 cohort was 17.4 per 1,000. Our 2000 cohort only included children from Union County and the ASD estimate for that cycle of ASD monitoring was 20.4 per 1,000. The ASD ascertainment method used in New Jersey is also used to determine ASD prevalence in twelve Autism and Developmental Disorders Monitoring (ADDM) Network states. Across cycles, in comparision to other states conducting ASD monitoring according to the same ascertainment method, New Jersey has been a cosistent leading indicator of ASD prevalence.Among children born in 2002 (study year 2010), the ASD prevalence estimate for children living in our New Jersey region was 21.9 per 1,000, a rate that is consistent with approximately 1 child in 45 with ASD. The 2010 New Jersey ASD estimate is significantly higher than ASD rates from from other ADDM Network states.
A 2% ASD prevalence rate across the surveyed New Jersey counties confirms that more families than ever before are affected and that ASD is an important public health problem. Over a ten-year period, since our first prevalence estimate (study year 2000), ASD prevalence in the New Jersey metropolitan region has increased approximately 120%. The increase in ASD prevalence was broad, affecting boys and girls, children of all races/ethnicities and ASD types.
While we do not know why ASD rates are higher in our region, part of the reason may be due to the higher quality of subject-specific information available for analysis in New Jersey. Future reports from our research group will track changes in ASD prevalence and describe the demographic distribution of this key disorder.
ASD monitoring is important for New Jersey educators, health providers and policy makers. By appreciating the true scope of ASD in our state, families, educators, clinicians and public health leaders can make informed plans to help address the needs of individuals with ASD and their families.
New Jersey Autism Study has been made possible by support from the CDC and the New Jersey Governor's Council for Biomedical Medical Research and Treatment of Autism. For additional information please visit: www.cdc.gov/autism or www.njautismcouncil.org or http://njms.rutgers.edu/departments/pediatrics/njas/
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