Mortality in Autism: A Prospective Longitudinal Community-Based Study

Abstract

The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962–1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (≥18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females. Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism “per se” actually carries an increased mortality risk.

This is a preview of subscription content, log in to check access.

References

  1. American Psychiatric Association. (1980). Diagnostic and Statistical manual of mental disorders (3rd ed.). Washington, DC: American Psychiatric Association.

    Google Scholar 

  2. American Psychiatric Association. (1987). Diagnostic and Statistical manual of mental disorder (3rd ed. revised). Washington, DC: American Psychiatric Association.

  3. American Psychiatric Association. (1994). Diagnostic and Statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Association.

    Google Scholar 

  4. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2005). Autism after adolescence: Population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 3, 351–360.

    Article  Google Scholar 

  5. Danielsson, S., Gillberg, I. C., Billstedt, E., Gillberg, C., & Olsson, I. (2006). Epilepsy in young adults with autism: A prospective population-based follow-up study of 120 individuals diagnosed in childhood. Epilepsia, 46, 918–923.

    Article  Google Scholar 

  6. Gillberg, C. (1984). Infantile autism and other childhood psychoses in a Swedish urban region. Epidemiological aspects. Journal of Child Psychology and Psychiatry, 25, 35–43.

    Article  PubMed  Google Scholar 

  7. Gillberg, C. (1991). Clinical and neurobiological aspects of Asperger syndrome in six family studies. In U. Frith (Ed.), Autism and Asperger syndrome (pp. 122–146). Cambridge: Cambridge University Press.

    Google Scholar 

  8. Gillberg, C., & Coleman, M. (1996). Autism and medical disorders: A review of the literature. Developmental Medicine and Child Neurology, 38, 191–202.

    PubMed  Article  Google Scholar 

  9. Gillberg, C., Schaumann, H., & Steffenburg, S. (1991). Is autism more common now than 10 years age? British Journal of Psychiatry, 158, 403–409.

    Article  PubMed  Google Scholar 

  10. Griffiths, R. (1970). The abilities of young children. London: Child Research Centre.

    Google Scholar 

  11. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229.

    Article  PubMed  Google Scholar 

  12. Lotter, V. (1978). Follow-up studies. In M. Rutter & E. Schopler (Eds.), Autism. A reappraisal of concepts and treatments (pp. 475–495). New York: Plenum Press.

    Google Scholar 

  13. Magne, O., & Wahlberg, G. (1961). Vineland social maturity scale (revised Swedish version). Hägersten: Psykologiförlaget.

    Google Scholar 

  14. Mouridsen, S. E., Bronnum-Hansen, H., Rich, B., & Isager, T. (2008). Mortality and causes of death in autism spectrum disorders: An update. Autism, 12, 413–414.

    Article  Google Scholar 

  15. Nordin, V., & Gillberg, C. (1998). The long-term outcome of autistic disorders. European Child and Adolescent Psychiatry, 7, 99–108.

    Google Scholar 

  16. Sparrow, S., Balla, D., & Cicchetti, D. (1984). Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service.

    Google Scholar 

  17. Steffenburg, S., & Gillberg, C. (1986). Autism and autistic-like condition in Swedish rural and urban areas: A population study. British Journal of Psychiatry, 149, 81–87.

    Article  PubMed  Google Scholar 

  18. Wechsler, D. (1981). Wechsler Adult Intelligence Scale—Revised. San Antonio, TX: Psychological Corporation.

    Google Scholar 

  19. Wechsler, D. (1992). Wechsler Intelligence Scale for Children (3rd ed.). London, UK: Psychological Corporation.

    Google Scholar 

  20. Wing, L., Leekam, S., Libby, S., Gould, J., & Larcombe, M. (2002). The diagnostic interview for social and communication disorders: Background, inter-rater reliability and clinical use. Journal of Child Psychology and Psychiatry, 43, 307–325.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This study was supported by grants from The Swedish Science Council (2006-3449) and from the Research Foundation of Wilhelm and Martina Lundgren.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Christopher Gillberg.

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Gillberg, C., Billstedt, E., Sundh, V. et al. Mortality in Autism: A Prospective Longitudinal Community-Based Study. J Autism Dev Disord 40, 352–357 (2010). https://doi.org/10.1007/s10803-009-0883-4

Download citation

Keywords

  • Autism
  • Asperger syndrome
  • Adults
  • Mortality
  • Epilepsy