The Arizona Developmental Disabilities Surveillance Program (ADDSP) has been designated by the Arizona Department of Health Services (ADHS) as the bona fide agent for surveillance of Autism Spectrum Disorders (ASD) and other developmental disabilities (DD) in Arizona and has maintained this designation since 2000. ADDSP is a collaborative effort of the Division of Genetics and Developmental Pediatrics and the College of Public Health at the University of Arizona; the Arizona University Center on Disabilities, University of Arizona Program Site; the ArizonaLEND program; the Arizona Department of Education; and the ADHS. DD included in the surveillance are ASD and intellectual disability (ID). The ADDSP includes multiple sources for case-finding, using both educational and clinical records. As part of the Autism and Developmental Disabilities Monitoring (ADDM) Network, ADDSP applies the case definition standardized across network sites for diagnostic confirmation of DD. ADDSP also provides education and training for medical and non-medical personnel to enhance their capacity to diagnose and report DD. Between 2000 and 2014, the prevalence of ASD among 8-year-olds as measured by the ADDM Network more than doubled, from 6.5 to 16.9 children per 1000.
The ADDSP surveillance area is defined by a contiguous set of school districts in Maricopa County, Arizona and the population under the new program will include both 8-year-old and 4-year-old children who have a parent or guardian residing within this area at any time during one of the two study years, 2018 and 2020. In addition, ADDSP will conduct follow-up on children previously identified by the network at age 8 who will be 16 years of age or older during 2019 – 2022. The follow-up will utilize both educational and medical records regardless of school district, whenever possible.
The purpose of Component A of this application is to demonstrate our capacity to conduct and enhance surveillance of ASD and ID in 4- and 8-year-old children in the same contiguous geographic area in which we have effectively and efficiently conducted surveillance since 2000. The purpose of Component B of this application is to expand our network capacity to include follow-up of previously identified 8-year old children who are now 16-years or older to determine how their clinical and educational status may have changed and to evaluate characteristics identified at age 8 years that predict an advantageous or unfavorable status at age 16. Extensive education and outreach activities will be focused on dissemination of ADDM data to stakeholders, agencies and others involved in public health policy, provision of services, and improvements in access to screening and early intervention. ADDSP will make measureable progress toward the following objectives:
OC1: Improved understanding of ASD, including trends & disparities in ASD prevalence over time and by demographic factors
OC2: Strengthened ASD surveillance among 4-year-old children
OC3: Improved understanding of differences in ASD characteristics by age through
OC4: Stronger relationships between recipient and partners/ data sources through
OC5: Increased dissemination of ADDM data through
OC6: Improved reliability & efficiency of ADDM surveillance through development and systematic adherence
OC11: Improved policies & plans that address ASD research agendas & services for children with ASD