Autism spectrum disorder (ASD) remains a public health concern, with a 243% overall increase in ASD prevalence over the past 2 decades. Estimates from the 2018 surveillance year, which included data from our Maryland ADDM site, showed 1 in 44 8-year-old children had ASD. There were also substantial differences in ASD identification by race, ethnicity, and co-occurring intellectual disability. The disabilities experiences by people with ASD lead to life-long health, education, and inter-personal challenges. Earlier identification of ASD is associated with improved outcomes. There is much debate in the field over whether this dramatic increase represents an increase in risk factors or an increase in awareness and changes to diagnostic criteria over that time-period, with evidence suggesting it likely is due to both. Regardless of the underlying reason, reliable estimates on the number of people identified as having ASD, at various life stages, and a deeper understanding of their characteristics of people with ASD are needed to inform risk factor research, public health response, and clinical/service provider resource planning initiatives.¿¿
To address this public health challenge and meet the needs of stakeholder groups, the Maryland ADDM (MD-ADDM) team plans to continue our long-standing productive contributions to the Autism and Developmental Disabilities Monitoring (ADDM) Network. We will provide ongoing reports of high-quality data on the prevalence and characteristics of ASD in Maryland to inform the ADDM estimate. We plan to implement 4 strategies to support this work: (1) Component A: perform ASD surveillance among 4- and 8-year-old children living in 5 suburban Maryland counties, (2) Component B: perform new ASD surveillance among 16-year-old children living in the same 5 counties using existing ADDM methodology, (3) leverage existing partnerships developed over the past 20 years and explore new relationships for effective communication of ADDM findings, providing community data for action, and (4) ensure high data quality, validity, and reliability through frequent monitoring and evaluation with measurable metrics and application of rigorous standardized methods developed by the ADDM network. This will enable reliable estimation of ASD prevalence in 2022 and 2024, assessment of differences by demographic and other health characteristics, and comparison of trends across developmental ages and calendar time. Comprehensive data will be provided through abstraction of data from multiple ASD data sources in Maryland, including education and health records. A particular strength of this proposal is the ability to perform cross-sectional comparisons across developmental ages by surveilling 3 age groups living in the same communities at the same time, and temporal comparisons, possible because Maryland has contributed prevalence estimate and ASD characteristic data to the ADDM network for the same communities over the past 20 years.¿
This project will result in obtaining high quality data for robust ASD prevalence estimates in 2022 and 2024, improved understanding of ASD prevalence and characteristics in 4- 8- and 16-year-olds, including temporal and developmental age trends, increased awareness of ASD disparities (e.g. differences in identification by race and/or co-occurring intellectual disability), a strengthened understanding of the potential in future years to link ADDM network data with state sources of post high school exit data on vocational, education, and health outcome data, and increased efficiencies for the ADDM surveillance network methods and approach.