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The impact of surveillance method and record source on autism prevalence: collaboration with Utah Maternal and Child

Judith Pinborough-Zimmerman1, Deborah Bilder, Robert Satterfield

  • 1Department of Psychiatry, University of Utah, Salt Lake City, UT, USA. judith.zimmerman@hsc.utah.edu

Maternal and Child Health Journal
|May 29, 2009
PubMed

Insights

Autism spectrum disorder (ASD) prevalence in Utah varied significantly based on surveillance methods. Collaboration between health and education sectors is crucial for addressing the needs of children with ASD.

Area of Science:

  • Pediatric Health
  • Public Health Surveillance
  • Autism Spectrum Disorders (ASDs)

Background:

  • Increasing identification of children with autism spectrum disorders (ASDs) in Utah necessitates understanding prevalence and characteristics.
  • Maternal Child Health (MCH) programs require data to develop effective prevention, screening, and education strategies for ASDs.
  • Existing surveillance methods may impact reported ASD prevalence rates.

Purpose of the Study:

  • To describe the Utah autism registry developed in partnership with state MCH programs.
  • To assess how different record-based surveillance methods influence state ASD prevalence rates.
  • To examine case characteristics across different ascertainment methods.

Main Methods:

  • Utilized data from 212 ASD cases among 26,217 eight-year-olds in three Utah counties in 2002.
  • Employed two record-based surveillance approaches: administrative diagnoses and abstraction with clinician review.
  • Analyzed data from education, health, and combined record sources to determine ASD prevalence and case characteristics.

Main Results:

  • ASD prevalence varied significantly (P < .05) from 3.2 to 7.5 per 1000 children, depending on the surveillance method and record source.
  • Male-to-female ratios ranged from 4.7:1 to 6.4:1.
  • No significant differences were observed in 18 of 23 case characteristics, including socioeconomic factors and age at diagnosis, between the two ascertainment methods.

Conclusions:

  • Record-based surveillance methods and data sources significantly impact reported ASD prevalence rates.
  • Effective ASD management requires integrated support from both education and health sectors, alongside MCH program collaboration.
  • Continued monitoring and research are essential to address the growing needs of children and families affected by ASDs.

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