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The Incidence of Clinically Diagnosed Versus Research-Identified Autism in Olmsted County, Minnesota, 1976–1997: Results from a Retrospective, Population-Based Study

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Abstract

Autism prevalence studies have often relied on administrative prevalence or clinical diagnosis as case-identification strategies. We report the incidence of clinical diagnoses of autism spectrum disorders (ASD), versus research-identified autism among residents of Olmsted County, Minnesota, age ≤21 years, from 1976–1997. The incidence of clinically diagnosed ASD (with 95% CI) was 1.5 per 100,000 (0.0–3.7) in 1980–1983 and 33.1 (22.8–43.3) in 1995–1997, a 22.1-fold increase. In contrast, the incidence of research-identified autism increased from 5.5 (1.4–9.5) per 100,000 to 44.9 (32.9–56.9), an 8.2-fold increase. Only 46.8% of research-identified cases received a clinical diagnosis of ASD. These findings demonstrate the potential for misleading interpretation of results from epidemiologic studies that rely on clinical diagnosis of autism to identify cases.

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Acknowledgments

This article was supported by a research grant from Mr. David S. and Mrs. Elaine Dana. The authors gratefully acknowledge the contributions of Ms. Diane Siems, Study Coordinator, Ms. Candice Klein and Ms. Jeaneen Alcorn for data collection, Ms. Sondra Buehler for assistance in manuscript preparation, Ms. Katherine Clement-Brown for assistance with data management, and Independent School District #535 for their cooperation and collaboration.

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Correspondence to William J. Barbaresi.

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Barbaresi, W.J., Colligan, R.C., Weaver, A.L. et al. The Incidence of Clinically Diagnosed Versus Research-Identified Autism in Olmsted County, Minnesota, 1976–1997: Results from a Retrospective, Population-Based Study. J Autism Dev Disord 39, 464–470 (2009). https://doi.org/10.1007/s10803-008-0645-8

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  • DOI: https://doi.org/10.1007/s10803-008-0645-8

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