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

Maternal and Child Health Journal

Volumn 14, Issue 3, 2010, Pages 392-400

  Pinborough Zimmerman, Judith ^a   Bilder, Deborah ^a   Satterfield, Robert ^b   Hossain, Shaheen ^b   McMahon, William ^a  

^a UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

^b UTAH DEPARTMENT OF HEALTH   (United States)

Author keywords

Autism spectrum disorders; Epidemiology; Maternal child health; Prevalence; Surveillance

Indexed keywords

ARTICLE; AUTISM; BIRTH CERTIFICATE; CAUCASIAN; CHILD; CHILD HEALTH CARE; COOPERATION; DEATH CERTIFICATE; DOCUMENTATION; EDUCATION; EVALUATION; FEMALE; HEALTH CARE QUALITY; HEALTH SURVEY; HISPANIC; HUMAN; MALE; MASS SCREENING; MEDICAL RECORD; METHODOLOGY; ORGANIZATION AND MANAGEMENT; PREVALENCE; PROGRAM DEVELOPMENT; PUBLIC RELATIONS; REGISTER; SEX RATIO; STATISTICS; UNITED STATES;

ABSTRACTING AND INDEXING AS TOPIC; BIRTH CERTIFICATES; CHILD; CHILD DEVELOPMENT DISORDERS, PERVASIVE; CHILD HEALTH SERVICES; COOPERATIVE BEHAVIOR; DEATH CERTIFICATES; EDUCATION, SPECIAL; EUROPEAN CONTINENTAL ANCESTRY GROUP; FEMALE; HISPANIC AMERICANS; HUMANS; INTERINSTITUTIONAL RELATIONS; MALE; MASS SCREENING; MEDICAL RECORD LINKAGE; POPULATION SURVEILLANCE; PREVALENCE; PROGRAM DEVELOPMENT; PROGRAM EVALUATION; REGISTRIES; SEX DISTRIBUTION; UTAH;

EID: 77954893219     PISSN: 10927875     EISSN: 15736628     Source Type: Journal    
DOI: 10.1007/s10995-009-0472-3     Document Type: Article

References (30)

1. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators. (2007). Prevalence of autism spectrum disorders-autism and developmental disabilities monitoring network, 14 Sites, United States, 2002. MMWR, 56(SS-1), 12-28.
2. Ritvo, E. T., Freeman, B. J., Pingree, C., et al. (1989). The UCLA-University of Utah epidemiologic survey of autism prevalence. The American Journal of Psychiatry, 146(2), 194-199.
3. Fombonne, E. (2006). Past and future perspectives in autism epidemiology. In S. O. Molden & J. L. R. Rubenstein (Eds.), Understanding autism (pp. 25-48). Baca Raton, FL: Taylor and Francis Group.
4. Blaxhill, M. F. (2004). What's going on? The question of time trends in autism. Public Health Reports, 119(6), 536-551. doi: 10.1016/j.phr.2004.09.003.
5. Wazana, A., Bresnahan, M., & Kline, J. (2007). The autism epidemic: Fact or artifact? Journal of the American Academy of Child and Adolescent Psychiatry, 46(6), 721-730. doi:10.1097/chi.0b013e31804a7f3b.
6. Shattuck, P. T. (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.2005-1516.
7. Newschaffer, C. J., Croen, L. A., Daniels, J., Giarelli, E., Grether, J. K., et al. (2007). The epidemiology of autism spectrum disorders. Annual Review of Public Health, 28, 235-258. doi:10.1146/annurev.publhealth.28.021406.144007.
8. Pinborough-Zimmerman, J., & McMahon, W. (2008). Autism: An urgent public health and education concern. The Utah Special Educator, Monograph Edition, 28(3)8-9.
9. Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 112(6), e1149-e1158. doi:10.1542/peds. 2008-1057.
10. Mandell, D. S., Cao, J., Ittenbach, R., & Pinto-Martin, J. (2006). Medicaid expenditures for children with autistic spectrum disorders: 1994 to 1999. Journal of Autism and Developmental Disorders, 36(4), 475-485. doi:10.1007/s10803-006-0088-z.
11. Utah Registry of Autism and Developmental Disabilities. http://health.utah.gov/autism. Accessed on April 6, 2009.
12. U.S. Department of Health and Human Services. (2007). Maternal and child health services title V block grant program: Guidance and forms for the title V application/annual report fourth edition. Rockville, MD: Maternal and Child Health Bureau, pp. 5-31.
13. Croen, L. A., Grether, J. K., Hoogstrate, J., & Selvin, S. (2002). The changing prevalence of autism in California. Journal of Autism and Developmental Disorders, 32, 207-215. doi:10.1023/A:1015453830880.
14. Mind Institute 2002 M.I.N.D. The epidemiology of autism in California. Report to the legislature on the principal findings from the epidemiology of autism in California: A comprehensive pilot study. http://www.mindfully.org/ Health/2002/Autism-In-California-MIND17oct02.htm. Accessed on January 08, 2009.
15. Newscaffer, C. J., Falb, M. D., & Gurney, J. G. (2005). National autism prevalence trends from the United States special education data. Pediatrics, 115(3), e277-e282. doi:10.1542/peds.2004-1958.
16. Rice, C., Baio, J., Van Naarden Braun, K., Doernberg, N., Meaney, F. J., Kirby, R. S., et al. (2007). Determining the prevalence of the autism spectrum disorders (ASDs) in the United States: Methodology used by the CDC-funded ADDM. Paediatric and Perinatal Epidemiology, 21(2), 179-190. doi:10.1111/j.1365-3016. 2007.00801.x.
17. Van Naarden Braun, K., Pettygrove, S., Daniels, J., et al. (2007). Evaluation of a methodology for a collaborative multiple source surveillance network for autism spectrum disorders-autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR, 29-40.
18. Yeargin-Allsop, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289(1), 49-55. doi:10.1001/jama.289.1.49.
19. Laidler, J. R. (2005). US department of education data on "autism" are not reliable for tracking autism prevalence. Pediatrics, 16, e120-e124. doi:10.1542/peds.2004-2341.
20. Utah Code - Title 26 - Utah Health Code. http://www.le.state.ut.us/~code/ TITLE26/TITLE26.htm. Accessed on March 6, 2008.
21. International Classification of Diseases. (1988). Clinical modification (9th Rev.). Washington, DC: Public Health Service, US Dept of Health and Human Services.
22. United States Department of Education. http://idea.ed.gov/explore/view/p/ ,root,regs,300,A,300%252E8,c. Accessed on April 6, 2009.
23. Governor's Office of Planning and Budget, Utah Population Estimates Committee. http://www.governor.utah.gov/dea/UPEC.html. Accessed on April 6, 2009.
24. Pinborough-Zimmerman, J., Satterfield, R., Miller, J., Bilder, D., Hossain, S., & McMahon, W. (2007). Communication disorders: Prevalence and comorbid intellectual disability, autism and emotional/behavioral disorders. American Journal of Speech- Language Pathology, 16(4), 359-367. doi:10.1044/1058-0360(2007/039).
25. Utah Birth Defect Network. http://hlunix.hl.state.ut.us/birthdefect. Accessed on October 7, 2008.
26. Utah Department of Health's Baby Watch Early Intervention Program. http://www.utahbabywatch.org. Accessed on October 7, 2008.
27. Utah Department of Health's Child Health Advanced Records Management Program. http://charm.health.utah.gov. Accessed on October 7, 2008.
28. Utah Department of Health's Center for Health Data IBIS-PH.http://ibis. health.utah.gov. Accessed on October 7, 2008.
29. Bilder, D., Pinborough-Zimmerman, J., Miller, J., & McMahon, W. (2009). Prenatal, perinatal and neonatal factors associated with autism spectrum disorders. Pediatrics, in press.
30. U.S. Department of Health and Human Services, Maternal and Child Health Bureau. Maternal child health bureau programs: Children with special health care needs MCHB objective. http://mchb.hrsa.gov/programs/default.htm. Accessed on April 6,2009.