Journal of Autism and Developmental Disorders

, Volume 39, Issue 8, pp 1099–1111 | Cite as

Trends in Autism Spectrum Disorder Diagnoses: 1994–2007

  • Rebecca E. Rosenberg
  • Amy M. Daniels
  • J. Kiely Law
  • Paul A. Law
  • Walter E. Kaufmann
Original Paper


We analyzed predictors of parent-reported initial diagnosis (autistic disorder [AD], pervasive developmental disorder-not otherwise specified [PDD-NOS], pervasive developmental disorder [‘PDD’] and autism spectrum disorder [‘ASD’], and Asperger syndrome [AS]), among 6,176 individuals with autism spectrum disorders diagnosed from 1994 through 2007. Overall, distribution of diagnoses was influenced by a secular time trend factor; other significant factors included ethnicity, white race, geographic location, urbanicity, and initial evaluator. Since 2001, most initial diagnoses of AD and AS have remained steady while ‘PDD’ and PDD-NOS have decreased. ‘ASD’ diagnoses have increased, especially among school-based teams; AS diagnoses also increased uniquely among these evaluators. Findings from this study suggest that current diagnostic guidelines may not be meeting all community evaluator needs.


Autism Asperger syndrome Pervasive developmental disorder Health disparity Classification 



This study was supported by Autism Speaks. The funder had no role in determining content. We thank Ms Teresa Foden for proofreading assistance. We gratefully acknowledge the contributions of IAN families without which this research would not be possible.


  1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders: DSM-IV Washington. DC: American Psychiatric Association.Google Scholar
  2. American Psychiatric Association. (2000). Disorders usually first diagnosed in infancy, childhood, or adolescence. Diagnostic and statistical manual of mental disorders, fourth edition, text revision (DSM-IV-TR) (Fourth, Text Revision ed.,). Arlington, VA: American Psychiatric Association. doi: 10.1176/appi.books.9780890423349.
  3. Begeer, S., Bouk, S. E., Boussaid, W., Terwogt, M. M., & Koot, H. M. (2009). Underdiagnosis and referral bias of autism in ethnic minorities. Journal of Autism and Developmental Disorders, 39(1), 142–148. doi: 10.1007/s10803-008-0611-5.PubMedCrossRefGoogle Scholar
  4. Beglinger, L. J., & Smith, T. H. (2001). A review of subtyping in autism and proposed dimensional classification model. Journal of Autism and Developmental Disorders, 31(4), 411–422. doi: 10.1023/A:1010616719877.PubMedCrossRefGoogle Scholar
  5. Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsopp, M., & Decoufle, P. (2001). Prevalence of autism in a United States population: The brick township, New Jersey, investigation. Pediatrics, 108(5), 1155–1161. doi: 10.1542/peds.108.5.1155.PubMedCrossRefGoogle Scholar
  6. Berument, S. K., Rutter, M., Lord, C., Pickles, A., & Bailey, A. (1999). Autism screening questionnaire: Diagnostic validity. The British Journal of Psychiatry: The Journal of Mental Science, 175, 444–451. doi: 10.1192/bjp.175.5.444.CrossRefGoogle Scholar
  7. Bitsika, V., Sharpley, C. F., Orapeleng, S. (2008). An exploratory analysis of the use of cognitive, adaptive and behavioural indices for cluster analysis of ASD subgroups. Journal of Intellectual Disability Research: JIDR, 52(11 Special Issue: Mental Health and Intellectual Disability: XXIV), 973–985.Google Scholar
  8. Bristol, M. M., Cohen, D. J., Costello, E. J., Denckla, M., Eckberg, T. J., Kallen, R., et al. (1996). State of the science in autism: Report to the national institutes health. Journal of Autism and Developmental Disorders, 26(2), 121–154. doi: 10.1007/BF02172002.PubMedCrossRefGoogle Scholar
  9. Cath, D. C., Ran, N., Smit, J. H., van Balkom, A. J., & Comijs, H. C. (2008). Symptom overlap between autism spectrum disorder, generalized social anxiety disorder and obsessive-compulsive disorder in adults: A preliminary case-controlled study. Psychopathology, 41(2), 101–110. doi: 10.1159/000111555.PubMedCrossRefGoogle Scholar
  10. Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA: The Journal of the American Medical Association, 285(24), 3093–3099. doi: 10.1001/jama.285.24.3093.CrossRefGoogle Scholar
  11. Charman, T. (2002). The prevalence of autism spectrum disorders. Recent evidence and future challenges. European Child & Adolescent Psychiatry, 11(6), 249–256. doi: 10.1007/s00787-002-0297-8.CrossRefGoogle Scholar
  12. Charman, T., Taylor, E., Drew, A., Cockerill, H., Brown, J. A., & Baird, G. (2005). Outcome at 7 years of children diagnosed with autism at age 2: Predictive validity of assessments conducted at 2 and 3 years of age and pattern of symptom change over time. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46(5), 500–513. doi: 10.1111/j.1469-7610.2004.00377.x.CrossRefGoogle Scholar
  13. Croen, L. A., Grether, J. K., & Selvin, S. (2002). Descriptive epidemiology of autism in a California population: Who is at risk? Journal of Autism and Developmental Disorders, 32(3), 217–224. doi: 10.1023/A:1015405914950.PubMedCrossRefGoogle Scholar
  14. Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T., Cook, E. H., Jr, Dawson, G., et al. (2000). Practice parameter: Screening and diagnosis of autism: Report of the quality standards subcommittee of the American academy of neurology and the child neurology society. Neurology, 55(4), 468–479.PubMedGoogle Scholar
  15. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33(4), 365–382. doi: 10.1023/A:1025054610557.PubMedCrossRefGoogle Scholar
  16. Fombonne, E. (2005). Epidemiologic studies of pervasive developmental disorders. In F. Volkmar, R. Paul, A. Klin, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders, diagnosis, development, neurobiology, and behavior (3rd ed., pp. 42–69). New York: Wiley.Google Scholar
  17. Johnson, C. P., Myers, S. M., & American Academy of Pediatrics Council on Children With Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215. doi: 10.1542/peds.2007-2361.PubMedCrossRefGoogle Scholar
  18. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.Google Scholar
  19. Klin, A., Lang, J., Cicchetti, D. V., & Volkmar, F. R. (2000). Brief report: Interrater reliability of clinical diagnosis and DSM-IV criteria for autistic disorder: Results of the DSM-IV autism field trial. Journal of Autism and Developmental Disorders, 30(2), 163–167. doi: 10.1023/A:1005415823867.PubMedCrossRefGoogle Scholar
  20. Mahoney, W. J., Szatmari, P., MacLean, J. E., Bryson, S. E., Bartolucci, G., Walter, S. D., et al. (1998). Reliability and accuracy of differentiating pervasive developmental disorder subtypes. Journal of the American Academy of Child and Adolescent Psychiatry, 37(3), 278–285. doi: 10.1097/00004583-199803000-00012.PubMedCrossRefGoogle Scholar
  21. Mandell, D. S., Morales, K. H., Marcus, S. C., Stahmer, A. C., Doshi, J., & Polsky, D. E. (2008). Psychotropic medication use among medicaid-enrolled children with autism spectrum disorders. Pediatrics, 121(3), e441–e448. doi: 10.1542/peds.2007-0984.PubMedCrossRefGoogle Scholar
  22. Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110–115. doi: 10.1002/mrdd.20061.PubMedCrossRefGoogle Scholar
  23. Mandell, D. S., & Palmer, R. (2005). Differences among states in the identification of autistic spectrum disorders. Archives of Pediatrics and Adolescent Medicine, 159(3), 266–269. doi: 10.1001/archpedi.159.3.266.PubMedCrossRefGoogle Scholar
  24. Mayes, S. D., Calhoun, S. L., & Crites, D. L. (2001). Does DSM-IV asperger’s disorder exist? Journal of Abnormal Child Psychology, 29(3), 263–271. doi: 10.1023/A:1010337916636.PubMedCrossRefGoogle Scholar
  25. McPartland, J., & Klin, A. (2006). Asperger’s syndrome. Adolescent Medicine Clinics, 17(3), 771–788. abstract xiii.PubMedGoogle Scholar
  26. Myhr, G. (1998). Autism and other pervasive developmental disorders: Exploring the dimensional view. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 43(6), 589–595.PubMedGoogle Scholar
  27. National Research Council Committee on Educational Interventions for Children with Autism. (2001). Educating children with autism. Washington, DC: National Academy Press.Google Scholar
  28. Nomura, Y., & Segawa, M. (2005). Natural history of rett syndrome. Journal of Child Neurology, 20(9), 764–768. doi: 10.1177/08830738050200091201.PubMedCrossRefGoogle Scholar
  29. Starr, E., Szatmari, P., Bryson, S., & Zwaigenbaum, L. (2003). Stability and change among high-functioning children with pervasive developmental disorders: A 2-year outcome study. Journal of Autism and Developmental Disorders, 33(1), 15–22. doi: 10.1023/A:1022222202970.PubMedCrossRefGoogle Scholar
  30. Szatmari, P. (2000). The classification of autism, asperger’s syndrome, and pervasive developmental disorder. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 45(8), 731–738.PubMedGoogle Scholar
  31. University of Washington. (2008). RHRC rural urban commuting area codes. Retrieved 12/12/2008, from
  32. Walker, D. R., Thompson, A., Zwaigenbaum, L., Goldberg, J., Bryson, S. E., Mahoney, W. J., et al. (2004). Specifying PDD-NOS: A comparison of PDD-NOS, asperger syndrome, and autism. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 172–180. doi: 10.1097/00004583-200402000-00012.PubMedCrossRefGoogle Scholar
  33. Waterhouse, L., Morris, R., Allen, D., Dunn, M., Fein, D., Feinstein, C., et al. (1996). Diagnosis and classification in autism. Journal of Autism and Developmental Disorders, 26(1), 59–86. doi: 10.1007/BF02276235.PubMedCrossRefGoogle Scholar
  34. Williams, M. E., Atkins, M., & Soles, T. (2008). Assessment of autism in community settings: Discrepancies in classification. Journal of Autism and Developmental Disorders, 39(4), 660–669. doi: 10.1007/s10803-008-0668-1.PubMedCrossRefGoogle Scholar
  35. World Health Organization. (1992). International classification of diseases—10, (, Geneva.
  36. Young, D. J., Bebbington, A., Anderson, A., Ravine, D., Ellaway, C., Kulkarni, A., et al. (2008). The diagnosis of autism in a female: Could it be Rett syndrome? European Journal of Pediatrics, 167(6), 661–669.PubMedCrossRefGoogle Scholar
  37. Zhao, X., Leotta, A., Kustanovich, V., Lajonchere, C., Geschwind, D. H., Law, K., et al. (2007). A unified genetic theory for sporadic and inherited autism. Proceedings of the National Academy of Sciences of the United States of America, 104(31), 12831–12836. doi: 10.1073/pnas.0705803104.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  • Rebecca E. Rosenberg
    • 1
  • Amy M. Daniels
    • 2
  • J. Kiely Law
    • 1
  • Paul A. Law
    • 1
    • 3
  • Walter E. Kaufmann
    • 4
    • 5
  1. 1.Department of Medical InformaticsKennedy Krieger Institute, Johns Hopkins Medical InstitutionsBaltimoreUSA
  2. 2.Department of Mental HealthJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  3. 3.Department of PediatricsJohns Hopkins University School of Medicine, Johns Hopkins Medical InstitutionsBaltimoreUSA
  4. 4.Center for Genetic Disorders of Cognition & BehaviorKennedy Krieger InstituteBaltimoreUSA
  5. 5.Departments of Pathology, Neurology, Pediatrics, Psychiatry, and RadiologyJohns Hopkins University School of Medicine, Johns Hopkins Medical InstitutionsBaltimoreUSA

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