Journal of Autism and Developmental Disorders

, Volume 41, Issue 1, pp 110–121 | Cite as

Stability of Initial Autism Spectrum Disorder Diagnoses in Community Settings

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

Abstract

The study’s objectives were to assess diagnostic stability of initial autism spectrum disorder (ASD) diagnoses in community settings and identify factors associated with diagnostic instability using data from a national Web-based autism registry. A Cox proportional hazards model was used to assess the relative risk of change in initial ASD diagnosis as a function of demographic characteristics, diagnostic subtype, environmental factors and natural history. Autistic disorder was the most stable initial diagnosis; pervasive developmental disorder—not otherwise specified was the least stable. Additional factors such as diagnosing clinician, region, when in time a child was initially diagnosed, and history of autistic regression also were significantly associated with diagnostic stability in community settings. Findings suggest that the present classification system and other secular factors may be contributing to increasing instability of community-assigned labels of ASD.

Keywords

Diagnosis stability Children Autism spectrum disorders Community settings 

References

  1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Association.Google Scholar
  2. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: American Psychiatric Association.Google Scholar
  3. Autism and Developmental Disabilities Monitoring Network 2006 Principal Investigators. (2009). Prevalence of autism spectrum disorders—Autism and developmental disabilities monitoring network, United States, 2006. Morbidity and Mortality Weekly Report, 58(SS-10), 1–21.Google Scholar
  4. 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 of Health. Journal of Autism and Developmental Disorders, 26(2), 121–154.CrossRefPubMedGoogle Scholar
  5. Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2008). Asperger’s syndrome and autism: A comparative longitudinal follow-up study more than four years after original diagnosis. Journal of Autism and Developmental Disorders, 38, 72–85.CrossRefPubMedGoogle Scholar
  6. Charman, T., & Baird, G. (2002). Practitioner review: Diagnosis of autism spectrum disorder in 2- and 3-year-old children. Journal of Child Psychology and Psychiatry, 43(3), 289–305.CrossRefPubMedGoogle Scholar
  7. Charman, T., Taylor, E., Drew, A., Cockerill, H., Brown, J., & 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, 46(5), 500–513.CrossRefPubMedGoogle Scholar
  8. Chawarska, K., Klin, A., Paul, R., & Volkmar, F. (2007). Autism spectrum disorder in the second year: Stability and change in syndrome expression. Journal of Child Psychology and Psychiatry, 48(2), 128–138.CrossRefPubMedGoogle Scholar
  9. Cox, D. R. (1972). Regression models and life-tables. Journal of the Royal Statistical Society. Series B (Methodological), 34(2), 187–220.Google Scholar
  10. Evans, J. R., & Mathur, A. (2005). The value of online surveys. Internet Research, 15(2), 195–219.CrossRefGoogle Scholar
  11. Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T., Cook, E. H., 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
  12. Gosling, S. D., Vasire, S., Srivastava, S., & John, O. P. (2004). Should we trust Web-based studies? A comparative analysis of six preconceptions about the Internet questionnaires. AmericanPsychologist, 59(2), 93–104.CrossRefGoogle Scholar
  13. Hernandez, R. N., Feinberg, R. L., Vaurio, R., Passanante, N. M., Thompson, R. E., & Kaufmann, W. E. (2009). Autism spectrum disorder in fragile x syndrome: A longitudinal evaluation. American Journal of Medical Genetics, Part A, 149A, 1125–1137.CrossRefGoogle Scholar
  14. Hosmer, D. W., Lemeshow, S., & May, S. (2008). Applied survival analysis: Regression modeling of time to event data (2nd ed.). New York: Wiley-Interscience.Google Scholar
  15. Huang, H. (2006). Do print and web surveys provide the same results? Computers in Human Behavior, 22, 334–350.CrossRefGoogle Scholar
  16. Itzchak, E. B., & Zachor, D. A. (2009). Changes in autism classification with early intervention: Predictors and outcomes. Research in Autism Spectrum Disorders, 3, 967–976.CrossRefGoogle Scholar
  17. Johnson, C. P., Myers, S. M., & The Council on Children with Disabilities. (2007). Clinical report: Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.CrossRefPubMedGoogle Scholar
  18. Kleinman, J. M., Ventola, P. E., Pandy, J., Verbalis, A. D., Barton, M., Hodgson, S., et al. (2008). Diagnostic stability in very young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 606–615.CrossRefPubMedGoogle Scholar
  19. Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A., Perrin, J. M., Ghandour, R. M., et al. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124(4), 1–9.Google Scholar
  20. Lord, C., & Luyster, R. (2006). Early diagnosis of children with autism spectrum disorders. Clinical Neuroscience Research, 6, 189–194.CrossRefGoogle Scholar
  21. Lord, C., Risi, S., DiLavor, P. S., Shulman, C., Thurn, A., & Pickles, A. (2006). Autism from 2 to 9 years of age. Archives of General Psychiatry, 63, 694–701.CrossRefPubMedGoogle Scholar
  22. Mahoney, W., Szatmari, P., Maclean, J. E., Bryson, S. E., Bartolucci, G., Walter, S. D., et al. (1998). Reliability and accuracy of differentiating between pervasive developmental disorder subtypes. Journal of the American Academy of Child and Adolescent Psychiatry, 37(3), 278–285.CrossRefPubMedGoogle Scholar
  23. Moss, J., Magiati, I., Charman, T., & Howlin, P. (2008). Stability of the Autism diagnostic interview-revised from pre-school to elementary school age in children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1081–1091.CrossRefPubMedGoogle Scholar
  24. Rosenberg, R. E., Daniels, A. M., Law, J. K., Law, P. A., & Kaufmann, W. E. (2009). Trends in autism spectrum disorder diagnoses: 1994–2007. Journal of Autism and Developmental Disorders, 39(8), 1099–1111.CrossRefPubMedGoogle Scholar
  25. Rutter, M., Bailey, A., & Lord, C. (2003). Social communication questionnaire (SCQ). Los Angeles: Western Psychological Services.Google Scholar
  26. Scambler, D. J., Hepburn, S. L., & Rogers, S. J. (2006). A two-year follow-up on risk status identified by the checklist for Autism in Toddlers. Journal of Developmental and Behavioral Pediatrics, 27(2), S104–S110.CrossRefPubMedGoogle Scholar
  27. StataCorp. (2007). Stata statistical software (Release 10) [Computer software]. College Station, TX: StataCorp LP.Google Scholar
  28. Stone, W. L., Lee, E. B., Ashford, L., Brissie, J., Hepburn, S. L., Coonrod, E. E., et al. (1999). Can autism be diagnosed accurately in children under three years? Journal of Child Psychology and Psychiatry, 40, 219–226.CrossRefPubMedGoogle Scholar
  29. Szatmari, P. (2000). The classification of autism, Asperger’s syndrome, and pervasive developmental disorder. Revue Canadienne de Psychiatrie, 45(8), 731–738.PubMedGoogle Scholar
  30. Turner, L. M., & Stone, W. L. (2007). Variability in outcome for children with ASD diagnosis at age 2. Journal of Child Psychology and Psychiatry, 48(8), 793–802.CrossRefPubMedGoogle Scholar
  31. Turner, L. M., Stone, W. L., Pozdol, S. L., & Coonrod, E. E. (2006). Follow-up of children with autism spectrum disorders from age 2 to age 9. Autism, 10, 243–264.CrossRefPubMedGoogle Scholar
  32. United States Census Bureau. (2009). Census regions and divisions of the United States. Retrieved February 1, 2009, from http://www.census.gov/geo/www/us_regdiv.pdf.
  33. U.S. Department of Health, Human Services, Health Resources, Services Administration, Maternal, Child Health Bureau. (2009). The National Survey of Children’s Health 2007. Rockville, Maryland: U.S. Department of Health and Human Services.Google Scholar
  34. University of Washington. (2009). Rural health research center rural-urban commuting area codes. Retrieved February 1, 2009, from http://depts.washington.edu/uwruca/download2006.html.
  35. van Daalen, E., Kemner, C., Dietz, C., Swinkles, S. H. N., Buitelaar, J. K., & van Engeland, H. (2009). Inter-rater reliability and stability of diagnoses of autism spectrum disorder in children identified through screening at very young age. European Child and Adolescent Psychiatry, 18, 663–674.CrossRefPubMedGoogle Scholar
  36. 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.CrossRefPubMedGoogle Scholar
  37. Wiggins, L. D., Baio, J., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population—based sample. Developmental and Behavioral Pediatrics, 27(2), S79–S87.CrossRefGoogle Scholar
  38. Williams, M. E., Atkins, M., & Soles, T. (2009). Assessment of Autism in community settings: Discrepancies n classification. Journal of Autism and Developmental Disorders, 39, 660–669.CrossRefPubMedGoogle Scholar
  39. Wilson, A., & Laskey, N. (2003). Internet based marketing research: A serious alternative to traditional research methods? Marketing Intelligence & Planning, 21(2), 79–84.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  • Amy M. Daniels
    • 1
    • 2
  • Rebecca E. Rosenberg
    • 1
  • J. Kiely Law
    • 1
    • 3
  • Catherine Lord
    • 4
  • Walter E. Kaufmann
    • 5
    • 6
  • Paul A. Law
    • 1
    • 3
  1. 1.Department of Medical InformaticsKennedy Krieger InstituteBaltimoreUSA
  2. 2.Department of Mental HealthJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  3. 3.Department of Pediatrics, Johns Hopkins University School of MedicineJohns Hopkins Medical InstitutionsBaltimoreUSA
  4. 4.University of Michigan Autism and Communication Disorders Center (UMACC), University of MichiganAnn ArborUSA
  5. 5.Center for Genetic Disorders of Cognition & BehaviorKennedy Krieger InstituteBaltimoreUSA
  6. 6.Departments of Pathology, Neurology, Pediatrics, Psychiatry, and Radiology, Johns Hopkins University School of MedicineJohns Hopkins Medical InstitutionsBaltimoreUSA

Personalised recommendations