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Autism Spectrum Disorder Prevalence Rates in the United States: Methodologies, Challenges, and Implications for Individual States

  • Emily Ramsey
  • Lisa Kelly-Vance
  • Joseph A. Allen
  • Olivia Rosol
  • Michael Yoerger
ORIGINAL ARTICLE

Abstract

Many different studies have been conducted to determine the prevalence rates of Autism Spectrum Disorder (ASD) in the United States. The methodologies of these studies have varied, resulting in a multitude of publications with differing prevalence rates. Because there is such a wide range in the results of prevalence studies, it may be difficult for individual states to determine their rates. Accurate prevalence rates are important to obtain for many different reasons including increasing advocacy and awareness, increasing funding, and proper allocation of services for individuals with ASD and their families. Additionally, prevalence studies can be used to assess which groups are more at risk for ASD based off location and environmental factors. This paper describes different methodologies that can be utilized to determine ASD prevalence rates, the strengths and weaknesses of each method, and the challenges to determining accurate rates. This paper also includes the results from a study conducted in Nebraska to determine prevalence rates of ASD in the state. Implications for future prevalence studies are addressed and recommendations are provided.

Keywords

Autism Autism spectrum disorder Prevalence rates Intervention Decision-making 

Notes

Compliance with Ethical Standards

Funding

This study was funded by Autism Action Partnership and the Weitz Family Foundation.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Conflicts of Interest

The authors declare that they have no additional conflicts of interest.

References

  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.CrossRefGoogle Scholar
  2. Autism Society (2015). Autism diagnoses. Retrieved from: http://www.autism-society.org/what-is/diagnosis/.
  3. Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population studies. The British Journal of Psychiatry, 194, 500–509. doi: 10.1192/bjp.bp.108.059345.CrossRefPubMedGoogle Scholar
  4. Blumberg, S.B, Bramlett, M.D., Kogan, M.D., Schieve, L.A., Jones, J.R.., & Lu, M.C. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. children: 2007 to 2001–2012. National Health Statistics Report, 65.Google Scholar
  5. Boswell, K., Zablotsky, B., & Smith, C. (2014). Predictors of autism enrollment in public school systems. Exceptional Children, 81(1), 96–106. doi: 10.1177/0014402914532230.CrossRefGoogle Scholar
  6. Brock, S.E. (2006). An examination of the changing rates of autism in special education. The California School Psychologist, II, 31–39. Retrieved from http://education.ucsb.edu/school-psychology/CSP-Joumal/index.html.
  7. Bureau of Autism Services (2009). Pennsylvania autism census project: final report. Retrieved from: http://www.med.upenn.edu/autism/PA%20Autism%20Census%20Project.pdf. Pennsylvania Department of Public Welfare.
  8. Bureau of Autism Services (2009). A valuable resource for the autism community. (n.d).Google Scholar
  9. California Department of Developmental Services (2003). Autism spectrum disorders: changes in the California caseload. Retrieved from: http://www.dds.ca.gov/Autism/pdf/AutismReport2003.pdf.
  10. Centers for Disease Control and Prevention (CDC). (2012). Prevalence of autism spectrum disorders autism and developmental disabilities monitoring network, United States, 2008. MMWR Surveillance Summaries, 61(3), 1–19.Google Scholar
  11. Centers for Disease Control and Prevention (CDC). (2014). Prevalence of autism spectrum disorders among children aged 8 years—autism and developmental disabilities monitoring network, United States, 2010. MMWR Surveillance Summaries, 63(2), 1–21.Google Scholar
  12. Council for Affordable Health Insurance (2009). The growing trend toward mandating autism coverage. Solutions for Today’s Health Policy Challenges, 152. Retrieved from: http://www.cahi.org/cahi_contents/resources/pdf/n152AutismTrend.pdf
  13. Department of Health and Human Services (2003). Protecting personal information in research: understanding the HIPAA privacy rule. Retrieved from: http://www.hhs.gov/ocr/privacy/.
  14. European Commission (2005). Some elements about the prevalence of autism spectrum disorders in the European union. Retrieved from: http://ec.europa.eu/health/ph_information/dissemination/diseases/autism_1.pdf.
  15. Fombonne, E. (2003). Epidemiology of pervasive developmental disorders. Trends in Evidence-Based Neuropsychiatry, 5, 29–36.Google Scholar
  16. Fombonne, E., Quirke, S., & Hagen, A. (2009). Prevalence and interpretation of recent trends in rates of pervasive developmental disorders. McGill Journal of Medicine: MJM, 12(2), 99–107.Google Scholar
  17. Harvard School of Public Health (2006). Autism has high costs to U.S. society. Retrieved from: http://archive.sph.harvard.edu/press-releases/2006-releases/press04252006.html
  18. Hawkins, S.C. (2009). Medical diagnosis vs. educational determination a distinction that makes a difference. Autism E-News. 7(3) 3 January 2009, Training and Technical Assistance Centers, Virginia.Google Scholar
  19. Individuals With Disabilities Education Act (2004). Retrieved from: http://idea.ed.gov/explore/home.
  20. Kielinen, M., Linna, S. L., & Moilanen, I. (2000). Autism in Northern Finalnd. European Journal of Child and Adolescent Psychiatry, 9, 162–167.CrossRefGoogle Scholar
  21. Mandell, D., & Lecavalier, L. (2014). Should we believe the centers for disease control and Prevention’s autism spectrum disorder prevalence estimates? Autism, 18, 482–484. doi: 10.1177/1362361314538131.CrossRefPubMedGoogle Scholar
  22. National Conference of State Legislatures (2012). Insurance coverage for autism. Retrieved from: http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx.
  23. Newschaffer, C. J., Falb, M. D., & Gurney, J. G. (2005). National autism prevalence trends from United States special education data. Pediatrics, 115, e277–e282. doi: 10.1542/peds.2004-1958.CrossRefPubMedGoogle Scholar
  24. Nonkin Avchen, R., Wiggins, L.D., Devine, O., Van Naarden Braun, K., Rice, C., Hobson, N.C., & … Yeargin-Allsopp, M. (2011). Evaluation of a records-review surveillance system used to determine the prevalence of autism spectrum disorders. Journal Of Autism & Developmental Disorders, 41(2), 227–236. doi: 10.1007/s10803-010-1050-7.
  25. Pinborough-Zimmerman, J., Bilder, D., Satterfield, R., Hossain, S., & McMahon, W. (2010). The impact of surveillance method and record source on autism prevalence: collaboration with Utah maternal and child health programs. Maternal and Child Health Journal, 14, 392–400. doi: 10.1007/s10995-009-0472-3.CrossRefPubMedGoogle Scholar
  26. Posserud, M., Lundervold, A. J., Lie, S. A., & Gillberg, C. (2010). The prevalence of autism spectrum disorders: impact of diagnostic instrument and non-response bias. Social Psychiatry and Psychiatric Epidemiology, 45, 319–327. doi: 10.1007/s00127-009-0087-4.CrossRefPubMedGoogle Scholar
  27. Rice, C. E., Rosanoff, M., Dawson, G., Durkin, M. S., Croen, L. A., Singer, A., & Yeargin-Allsopp, M. (2012). Evaluating changes in the prevalence of the autism spectrum disorders (ASDs). Public Health Reviews (2107–6952), 34(2), 1–22.Google Scholar
  28. Saracino, J., Noseworthy, J., Steiman, M., Reisinger, L., & Fombonne, E. (2010). Diagnostic and assessment issues in autism surveillance and prevalence. Journal of Developmental and Physical Disabilities, 22, 317–330. doi: 10.1007/s10882-010-9205-1.CrossRefGoogle Scholar
  29. Shattuck, P. (2006). The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education. Pediatrics, 117, 1028–1037. doi: 10.1542/peds.2005-I516.CrossRefPubMedGoogle Scholar
  30. U.S. Department of Education (2015). Family educational rights and privacy act. Retrieved from: http://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html?src=ft.
  31. Wong, V. V., & Hui, S. H. (2008). Epidemiological study of autism spectrum disorder in china. Journal of Child Neurology, 23, 67–72. doi: 10.1177/0883073807308702.CrossRefPubMedGoogle Scholar
  32. Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., & Blumberg, S. J. (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. National Health Statistics Reports, 87, 1–20.Google Scholar
  33. Zaroff, C. M., & Uhm, S. Y. (2011). Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity. Social Psychiatry and Psychiatric Epidemiology, 47, 395–398.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Emily Ramsey
    • 1
  • Lisa Kelly-Vance
    • 2
  • Joseph A. Allen
    • 3
  • Olivia Rosol
    • 1
  • Michael Yoerger
    • 3
  1. 1.School Psychology, Department of PsychologyUniversity of Nebraska at OmahaOmahaUSA
  2. 2.School Psychology Graduate ProgramUniversity of Nebraska at OmahaOmahaUSA
  3. 3.Department of PsychologyUniversity of Nebraska at OmahaOmahaUSA

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