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Journal of Autism and Developmental Disorders

, Volume 33, Issue 4, pp 365–382 | Cite as

Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update

  • Eric Fombonne
Article

Abstract

This paper was commissioned by the committee on the Effectiveness of Early Education in Autism of the National Research Council (NRC). It provides a review of epidemiological studies of pervasive developmental disorders (PDD) which updates a previously published article (The epidemiology of autism: a review. Psychological Medicine 1999; 29: 769–786). The design, sample characteristics of 32 surveys published between 1966 and 2001 are described. Recent surveys suggest that the rate for all forms of PDDs are around 30/10,000 but more recent surveys suggest that the estimate might be as high as 60/10,000. The rate for Asperger disorder is not well established, and a conservative figure is 2.5/10,000. Childhood disintegrative disorder is extremely rare with a pooled estimate across studies of 0.2/10,000. A detailed discussion of the possible interpretations of trends over time in prevalence rates is provided. There is evidence that changes in case definition and improved awareness explain much of the upward trend of rates in recent decades. However, available epidemiological surveys do not provide an adequate test of the hypothesis of a changing incidence of PDDs.

Autism pervasive developmental disorder epidemiology prevalence incidence childhood disintegrative disorder Asperger disorder 

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REFERENCES

  1. Ahlsen, G., Gillberg, C., Lindblom, R., & Gillberg, C. (1994). Tuberous sclerosis in Western Sweden: a population study of cases with early childhood onset. Archives of Neurology, 51 76–81.PubMedGoogle Scholar
  2. Arvidsson, T., Danielsson, B., Forsberg, P., Gillberg, C., Johansson, M., & Kjellgren, G. (1997). Autism in 3–6 year-old children in a suburb of Goteborg, Sweden. Autism, 2 163–173.Google Scholar
  3. Aussilloux, C., Collery, F., & Roy, J. (1989). Epidémiologie de l'autisme infantile dans le département de l'Hérault. Revue Française de Psychiatric, 7, 6 24–28.Google Scholar
  4. Baird, G., Charman, T., Baron-Cohen, S., et al. (2000). A screening instrument for autism at 18 months of age: a 6 year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry 39, 694–702.PubMedGoogle Scholar
  5. Baron-Cohen, S., Saunders, K., & Chakrabarti, S. (1999). Does autism cluster geographically? A research note. Autism, 3 39–43.Google Scholar
  6. Bertrand, J., Mars, A., Boyle, C., et al. (2001). Pediatrics, 108 1155–161.PubMedGoogle Scholar
  7. Bohman, M., Bohman, I. L., Björck, P. O., & Sjöholm, E. (1983). Childhood psychosis in a northern Swedish county: some preliminary findings from an epidemiological survey in Epidemiological Approaches in Child Psychiatry, pp. 164–173, M. H. Schmidt & H. Remschmidt (Eds), Georg Thieme Verlag, Stuttgart.Google Scholar
  8. Brask, B. H. (1972). A prevalence investigation of childhood psychoses. In Nordic Symposium on the Care of Psychotic Children. Oslo: Barnepsychiatrist Forening.Google Scholar
  9. Bregman, J. D., & Volkmar, F. R. (1988). Autistic social dysfunction and Down's syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 27 440–441.PubMedGoogle Scholar
  10. Bryson, S. E., Clark, B. S., & Smith, I. M. (1988). First report of a Canadian epidemiological study of autistic syndromes. Journal of Child Psychology and Psychiatry, 4 433–445.Google Scholar
  11. Burd, L., Fisher, W., & Kerbeshan, J. (1987). A prevalence study of pervasive developmental disorders in North Dakota. Journal of the American Academy of Child and Adolescent Psychiatry, 26, 5 700–703.PubMedGoogle Scholar
  12. Department of Developmental Services. Changes in the population of persons with autism and pervasive developmental disorders in California's Developmental Services System: 1987 through 1998. Report to the Legislature March 1, 1999 19 pages. http://www.dds.ca.gov: 1999Google Scholar
  13. Chakrabarti, S., & Fombonne, E. (2001). Journal of the American Medical Association, 285 3093–3099.PubMedGoogle Scholar
  14. Chess, S. (1971). Autism in children with congenital rubella. Journal of Autism and Childhood Schizophrenia, 1 33–47.PubMedGoogle Scholar
  15. Chess, S. (1977). Follow-up report on autism in congential rubella. Journal of Autism and Childhood Schizophrenia, 7 69–81.PubMedGoogle Scholar
  16. Cialdella Ph., & Mamelle, N. (1989). An epidemiological study of infantile autism in a French department. Journal of Child Psychology and Psychiatry, 30, 1 165–175.PubMedGoogle Scholar
  17. Day, J. C. (1996). Population projections of the United States by age, sex, race, and Hispanic origin: 1995 to 2050. US Bureau of the Census, Current Population Reports, P25–1130, U.S. Government Printing Office, Washington, DC.Google Scholar
  18. De Giacomo, A., & Fombonne, E. (1998). Parental recognition of developmental abnormalities in autism. European Child and Adolescent Psychiatry 7, 131–136.PubMedGoogle Scholar
  19. Deykin, E. Y., & MacMahon, B. (1979). The incidence of seizures among children with autistic symptoms. American Journal of Psychiatry, 136, 10 1310–1312.PubMedGoogle Scholar
  20. Ehlers, S., & Gillberg, C. (1993). The epidemiology of Asperger syndrome. A total population study. Journal of Child Psychology and Psychiatry, 34 1327–1350.PubMedGoogle Scholar
  21. Fombonne, E. (1996). Is the prevalence of autism increasing? Journal of Autism and Developmental Disorders, 6 673–676.Google Scholar
  22. Fombonne, E. (1997). The prevalence of autism and other pervasive developmental disorders in the UK. Autism, 1 227–229.Google Scholar
  23. Fombonne, E. (1998). Inflammatory bowel disease and autism. Lancet 351, 955.Google Scholar
  24. Fombonne, E. (1999). The epidemiology of autism: a review. Psychological Medicine 29, 769–786.PubMedGoogle Scholar
  25. Fombonne, E. (2001a). What is the prevalence of Asperger syndrome? Journal of Autism and Developmental Disorders, 31: 3, 363–364.PubMedGoogle Scholar
  26. Fombonne, E. (2001b). Is there an epidemic of autism? Pediatrics 107, 411–413.PubMedGoogle Scholar
  27. Fombonne, E. (2002). Prevalence of childhood disintegrative disorder (CDD). Autism 6, 2 147–155.Google Scholar
  28. Fombonne, E., & du Mazaubrun, C. (1992). Prevalence of infantile autism in 4 French regions. Social Psychiatry and Psychiatric Epidemiology, 27 203–210.PubMedGoogle Scholar
  29. Fombonne, E., du Mazaubrun, C., Cans, C., & Grandjean, H. (1997). Autism and associated medical disorders in a large French epidemiological sample. Journal of the American Academy of Child and Adolescent Psychiatry, 36: 11, 1561–1569.PubMedGoogle Scholar
  30. Fombonne, E., Simmons, H., Ford, T., et al. (2001). Prevalence of pervasive developmental disorders in the British national survey of child mental health. Journal of the American Academy of Child and Adolescent Psychiatry 40, 820–827.PubMedGoogle Scholar
  31. Ghaziuddin, M., Tsai, L., & Ghaziuddin, N. (1992). Autism in Downs' syndrome: presentation and diagnosis. Journal of Intellectual Disability Research, 35 449–456.Google Scholar
  32. Gillberg, C. (1984). Infantile autism and other childhood psychoses in a Swedish region: epidemiological aspects. Journal of Child Psychology and Psychiatry, 25 35–43.PubMedGoogle Scholar
  33. Gillberg, C. (1987). Infantile autism in children of immigrant parents. A population-based study from Göteborg, Sweden. British Journal of Psychiatry, 150 856–858.Google Scholar
  34. Gillberg, C., & Forsell, C. (1984). Childhood psychosis and neurofibromatosis—more than a coincidence. Journal of Autism and Developmental Disorders, 13 1–8.Google Scholar
  35. Gillberg, C., Steffenburg, S., & Schaumann, H. (1991). Is autism more common now than ten year ago? British Journal of Psychiatry, 158 403–409.Google Scholar
  36. Gillberg, C., Gillberg, C., & Ahlsén, G. (1994). Autistic behaviour and attention deficits in tuberous sclerosis: a population-based study. Developmental Medicine and Child Neurology, 36 50–56.PubMedGoogle Scholar
  37. Gillberg, C., Schaumann, H., & Gillberg, I. C. (1995). Autism in immigrants: children born in Sweden to mothers born in Uganda. Journal of Intellectual Disability Research, 39 141–144.PubMedGoogle Scholar
  38. Gillberg, I. C., & Gillberg, C. (1996). Autism in immigrants: a population-based study from Swedish rural and urban areas. Journal of Intellectual Disability Research, 40 24–31.PubMedGoogle Scholar
  39. Gillberg, C., & Coleman, M. (1996). Autism and medical disorders: a review of the literature. Developmental Medicine and Child Neurology, 38 191–202.PubMedGoogle Scholar
  40. Goodman, R., & Richards, H. (1995). Child and adolescent psychiatric presentations of second-generation Afro-Caribbeans in Britain. British Journal of Psychiatry, 167 362–369.Google Scholar
  41. Haga, H., & Miyamoya, Y. (1971). A survey on the actual state of so-called autistic children in Kyoto prefecture. Japanese Journal of Child Psychiatry, 12 160–167.Google Scholar
  42. Herder, G. A. (1993). Infantile autism among children in the county of Nordland: prevalence and etiology. Tidsskr. Nor. Laegeforen, 113(18), 2247–2249.PubMedGoogle Scholar
  43. Hoffmann, W., & Schlattmann, P. (1999). An analysis of the geographical distribution of leukaemia incidence in the vicimity of a suspected point source: a case study. In: A. B. Lawson et al. (Editors): Disease mapping and risk assessment for public health. Wiley & Sons, Chichester, pp. 396–409.Google Scholar
  44. Hoshino, Y., Yashima, Y., Ishige, K., Tachibana, R., Watanabe, M., Kancki, M., Kumashiro, H., Ueno, B., Takahashi, E., & Furukawa, H. (1982). The epidemiological study of autism in FukushimaKen. Folia Psychiatrica et Neurologica Japonica, 36 115–124.PubMedGoogle Scholar
  45. Howlin, P., Wing, L., & Gould, J. (1995). The recognition of autism in children with Down syndrome. Implications for intervention and some speculations about pathology. Developmental Medicine and Child Neurology, 37 406–414.PubMedGoogle Scholar
  46. Hunt, A., & Lindenbaum, R. H. (1984). Tuberous sclerosis: a new estimate of prevalence within the Oxford region. Journal of Medical Genetics, 21 272–277.PubMedGoogle Scholar
  47. Isager, T., Mouridsen, S. E., & Rich, B. (1999). Mortality and causes of death in pervasive developmental disorders. Autism, 3 7–16.Google Scholar
  48. Ishii, T., & Takahashi, O. (1983). The epidemiology of autistic children in Toyota, Japan: Prevalence. Japanese Journal of Child and Adolescent Psychiatry, 24 311–321.Google Scholar
  49. Kadesjö, B., Gillberg, C., & Hagberg, B. (1999). Autism and Asperger syndrome in seven-year old children. A total population study. Journal of Autism and Developmental Disorders (in press).Google Scholar
  50. Kaye, J. A., Melero-Montes, M. M., & Jick, H. (2001). British Medical Journal 322: 0–2.Google Scholar
  51. Kielinen, M., Linna, S. L., & Moilanen, I. (2000). Autism in Northern Finland. European Child and Adolescent Psychiatry, 9 162–167.PubMedGoogle Scholar
  52. Knobloch, H., & Pasamanick, B. (1975). Some etiologic and prognostic factors in early infantile autism and psychosis. Pediatrics, 55 182–191.PubMedGoogle Scholar
  53. Kulldorff, M. (1999). Statistical evaluation of disease cluster alarms. In: A. B. Lawson et al. (Eds): Disease mapping and risk assessment for public health. Wiley & Sons, Chichester, pp. 143–149.Google Scholar
  54. Lawson, A., Biggeri, A., Bohning, D., Lesaffre, E., Viel, J.-F., & Bertollini, R. (1999). Disease mapping and risk assessment for public health. Wiley & Sons, Chichester.Google Scholar
  55. LeCouteur, A., Rutter, M., Lord, C., Rios, P., Robertson, S., Holdgrafer, M., & MacLennan, J. (1989). Autism Diagnostic Interview: a standardized investigator-based instrument. Journal of Autism and Developmental Disorders, 19 363–387.PubMedGoogle Scholar
  56. Leekam, S., Libby, S., Wing, L., Gould, J., & Gillberg, C. (2000). Comparison of ICD-10 and Gillberg's criteria for Asperger syndrome. Autism, 4 11–28.Google Scholar
  57. Lord, C., Schopler, E., & Revecki, D. (1982). Sex differences in autism. Journal of Autism and Developmental Disorders, 12 317–330.PubMedGoogle Scholar
  58. Lotter, V. (1966). Epidemiology of autistic conditions in young children: I. Prevalence. Social Psychiatry, 1 124–137.Google Scholar
  59. Lotter, V. (1967). Epidemiology of autistic conditions in young children: II. Some characteristics of the parents and children. Social Psychiatry, 1, 4 163–173.Google Scholar
  60. Lowe, T. L., Tanaka, K., Seashore, M. R., Young, J. G., & Cohen, D. J. (1980). Detection of phenylketonuria in autistic and psychiatric children. Journal of the American Medical Association, 243 126–128.PubMedGoogle Scholar
  61. Magnusson, G. T. (1977). Athugun á gedveikum bornum á íslandi: Born faedd 1964–1973. [An investigation of psychotic children in Iceland: Children born 1964–1973]. Laeknabladid 63, 237–243.Google Scholar
  62. Magnusson, P., & Saemundsen, E. (2001). Prevalence of autism in Iceland. Journal of Autism and Developmental Disorders 31: 153–163.PubMedGoogle Scholar
  63. Marshall, R. J. (1991). A review of methods for the statistical analysis of spatial patterns of disease. Journal of the Royal Statistical Society A, 154, 3 421–441.Google Scholar
  64. Mason-Brothers, A., Ritvo, E. R., Pingree, C., Petersen, P. B., Jenson, W. R., McMahon, W. M., Freeman, B. J., Jorde, L. B., Spencer, M. J., Mo, A., & Ritvo, A. (1990). The UCLA-University of Utah epidemiologic survey of autism: prenatal, perinatal, and postnatal factors. Pediatrics, 86 514–519.PubMedGoogle Scholar
  65. Matsuishi, T., Shiotsuki, M., Yoshimura, K., Shoji, H., Imuta, F., & Yamashita, F. (1987). High prevalence of infantile autism in Kurume City, Japan. Journal of Child Neurology, 2 268–271.PubMedGoogle Scholar
  66. McCarthy, P., Fitzgerald, M., & Smith, M. A. (1984). Prevalence of childhood autism in Ireland. Irish Medical Journal, 77, 5 129–130.PubMedGoogle Scholar
  67. Mouridsen, S. E., Bachmann-Andersen, L., Sörensen, S. A., Rich, B., & Isager, T. (1992). Neurofibromatosis in infantile autism and other types of childhood psychoses. Acta Paedopsychiatrica, 55 15–18.PubMedGoogle Scholar
  68. Nakai, M. (1971). Epidemiology of autistic children in Gifu-Ken. Japanese Journal of Child Psychiatry, 12 262–266.Google Scholar
  69. Powell, J., Edwards, A., Edwards, M., et al. (2000). Developmental Medicine and Child Neurology, 42 624–628.PubMedGoogle Scholar
  70. Ritvo, E. R., Freeman, B. J., Pingree, C., Mason-Brothers, A., Jorde, L., Jenson, W. R., McMahon, W. M., Petersen, P. B., Mo, A., & Ritvo, A. (1989). The UCLA-University of Utah epidemiologic survey of autism: prevalence. American Journal of Psychiatry, 146, 2 194–199.PubMedGoogle Scholar
  71. Rogers, J. S., & Di Lalla, D. (1990). Age of symptom onset in young children with pervasive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 29 207–216.Google Scholar
  72. Rumeau-Rouquette, C., du Mazaubrun, C., Verrier, A., Mlika, A., Bréart, G., Goujard, J., & Fombonne, E. (1994). Prévalence des handicaps: évolution dans trois générations d'enfants 1972, 1976, 1981. Paris, Editions INSERM.Google Scholar
  73. Rutter, M. (1970). Autistic children: infancy to adulthood. Seminars in Psychiatry, 2 435–450.PubMedGoogle Scholar
  74. Rutter, M., Bailey, A., Bolton, P., & Le Couteur, A. (1994). Autism and known medical conditions: myth and substance. Journal of Child Psychology and Psychiatry, 35 311–322.PubMedGoogle Scholar
  75. Schopler, E., Andrews, C. E., & Strupp, K. (1979). Do autistic children come from upper-middle-class parents? Journal of Autism and Developmental Disorders, 9, 2 139–151.PubMedGoogle Scholar
  76. Shepherd, C. W., Beard, C. M., Gomez, M. R., Kurland, L. T., & Whisnant, J. P. (1991). Tuberous sclerosis complex in Olmsted County, Minnesota, 1950–1989. Archives of Neurology, 48 400–401.PubMedGoogle Scholar
  77. Smalley, S. (1998). Autism and tuberous sclerosis. Journal of Autism and Developmental Disorders, 28 407–414.PubMedGoogle Scholar
  78. Smalley, S. L., Tanguay, P. E., Smith, M., & Gutierrez, G. (1992). Autism and tuberous sclerosis. Journal of Autism and Developmental Disorders, 22 339–355.PubMedGoogle Scholar
  79. Spitzer, R. L., & Siegel, B. (1990). The DSM-III-R field trial of pervasive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 6 855–862.Google Scholar
  80. Sponheim, E., & Skjeldal, O. (1998). Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. Journal of Autism and Developmental Disorders, 28 217–227.PubMedGoogle Scholar
  81. Steffenburg, S., & Gillberg, C. (1986). Autism and autistic-like conditions in Swedish rural and urban areas: a population study. British Journal of Psychiatry, 149 81–87.Google Scholar
  82. Steinhausen, H.-C., Göbel, D., Breinlinger, M., & Wohlloben, B. (1986). A community survey of infantile autism. Journal of the American Academy of Child Psychiatry, 25, 2 186–189.PubMedGoogle Scholar
  83. Sugiyama, T., & Abe, T. (1989). The prevalence of autism in Nagoya, Japan: a total population study. Journal of Autism and Developmental Disorders, 19, 1 87–96.PubMedGoogle Scholar
  84. Tanoue, Y., Oda, S., Asano, F., & Kawashima, K. (1988). Epidemiology of infantile autism in Southern Ibaraki, Japan: Differences in prevalence in birth cohorts. Journal of Autism and Developmental Disorders, 18 155–166.PubMedGoogle Scholar
  85. Taylor, B., Miller, E., Farrington, C. P., Petropoulos, M.-C., Favot-Mayaud, I., Li, J., & Waight, P. A. (1999). Autism and measles, mumps, and rubella vaccine: no epidemiological evidence for a causal association. The Lancet 353(June 12): 2026–2029.Google Scholar
  86. Treffert, D. A. (1970). Epidemiology of infantile autism. Archives of General Psychiatry, 22 431–438.PubMedGoogle Scholar
  87. Tsai, L., Stewart, M. A., Faust, M., & Shook, S. (1982). Social class distribution of fathers of children enrolled in the Iowa autism program. Journal of Autism and Developmental Disorders, 12, 3, 211–221.PubMedGoogle Scholar
  88. Tuchman, R. F., Rapin, I., & Shinnar, S. (1991). Autistic and dysphasic children II. Epilepsy. Pediatrics 88, 1219–1225.PubMedGoogle Scholar
  89. Volkmar, F. R. (1992). Childhood disintegrative disorder: issues for DSM-IV. Journal of Autism and Developmental Disorders, 22 625–642.PubMedGoogle Scholar
  90. Volkmar, F. R., & Nelson, D. S. (1990). Seizure disorders in autism. Journal of the American Academy of Child and Adolescent Psychiatry, 1 127–129.Google Scholar
  91. Volkmar, F. R., Klin, A., Siegel, B., Szatmark, I., Lord, C., Campbell, M., Freeman, B. J., Cicchetti, D. V., Rutter, M., Kline, W., Buitelaar, J., Hattab, Y., Fombonne, E., Fuentes, J., Werry, J., Stone, W., Kerbeshian, J., Hoshino, Y., Bergman, J., Loveland, K., Szymanski, L., & Towbin. (1994). Field trial for autistic disorder in DSM-iv, American Journal of Psychiatry, 151, 9 1361–1367.PubMedGoogle Scholar
  92. Webb, E. V. J., Lobo, S., Hervas, A., Scourfield, J., & Fraser, W. I. (1997). The changing prevalence of autistic disorder in a Welsh health district. Developmental Medicine and Child Neurology, 39, 150–152.PubMedGoogle Scholar
  93. Wing, L. (1980). Childhood autism and social class: a question of selection? British journal of Psychiatry, 137 410–417.Google Scholar
  94. Wing, L. (1993). The definition and prevalence of autism: a review. European Child and Adolescent Psychiatry, 2 61–74.Google Scholar
  95. Wing, L., Yeates, S. R., Brierly, L. M., & Gould, J. (1976). The prevalence of early childhood autism: comparison of administrative and epidemiological studies. Psychological Medicine, 6 89–100.PubMedGoogle Scholar
  96. Wing, L., & Gould, J. (1979). Severe impairments of social interactions and associated abnormalities in children: epidemiology and classification. Journal of Autism and Developmental Disorders, 9, 1, 11–29.PubMedGoogle Scholar
  97. Zahner, G. E. P., & Pauls, D. L. (1987). Epidemiological surveys of infantile autism. In: Handbook of Autism and Pervasive and Developmental Disorders, pp. 199–207, D. J. Cohen, A. M. Donnellan, & R. Paul (eds.). Wiley and Sons, New York.Google Scholar

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© Plenum Publishing Corporation 2003

Authors and Affiliations

  1. 1.Department of Psychiatry, The Montreal Children's HospitalMcGill UniversityMontreal

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