Skip to main content


Log in

Excess Mortality and Causes of Death in Autism Spectrum Disorders: A Follow up of the 1980s Utah/UCLA Autism Epidemiologic Study

  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript


This study’s purpose was to investigate mortality among individuals with autism spectrum disorders (ASD) ascertained during a 1980s statewide autism prevalence study (n = 305) in relation to controls. Twenty-nine of these individuals (9.5 %) died by the time of follow up, representing a hazard rate ratio of 9.9 (95 % CI 5.7–17.2) in relation to population controls. Death certificates identified respiratory, cardiac, and epileptic events as the most common causes of death. The elevated mortality risk associated with ASD in the study cohort appeared related to the presence of comorbid medical conditions and intellectual disability rather than ASD itself suggesting the importance of coordinated medical care for this high risk sub-population of individuals with ASD.

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

Access this article

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others


  • Baird, P. A., & Sadovnick, A. D. (1990). Underlying causes of death in Down syndrome: Accuracy of British Columbia death certificate data. Canadian Journal of Public Health, 81(6), 456–461.

    Google Scholar 

  • Bilder, D., Pinborough-Zimmerman, J., Miller, J., & McMahon, W. (2009). Prenatal, perinatal, and neonatal factors associated with autism spectrum disorders. Pediatrics, 123(5), 1293–1300.

    Article  PubMed  Google Scholar 

  • CIA World Factbook. (2011a). Sweden death rate. Retrieved from

  • CIA World Factbook. (2011b). United States death rate. Retrieved from

  • Centers for Disease Control and Prevention. (2009). Prevalence of autism spectrum disorders—Autism and developmental disabilities monitoring network, United States, 2006. Morbidity and Mortality Weekly Report, 58(10), 1–20.

    Google Scholar 

  • Danielsson, S., Gillberg, I. C., Billstedt, E., Gillberg, C., & Olsson, I. (2005). Epilepsy in young adults with autism: A prospective population-based follow-up study of 120 individuals diagnosed in childhood. Epilepsia, 46(6), 918–923.

    Article  PubMed  Google Scholar 

  • Depositario-Cabacar, D. F., & Zelleke, T. G. (2010). Treatment of epilepsy in children with developmental disabilities. Developmental Disabilities Research Reviews, 16(3), 239–247.

    Article  PubMed  Google Scholar 

  • Doria-Rose, V. P., & Marcus, P. M. (2009). Death certificates provide an adequate source of cause of death information when evaluating lung cancer mortality: An example from the Mayo Lung Project. Lung Cancer, 63(2), 295–300.

    Article  PubMed  Google Scholar 

  • Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism, 2(2), 109–118.

    Article  Google Scholar 

  • Gillberg, C., Billstedt, E., Sundh, V., & Gillberg, I. C. (2010). Mortality in autism: A prospective longitudinal community-based study. Journal of Autism and Developmental Disorders, 40(3), 352–357.

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  • Isager, T., Mouridsen, S. E., & Rich, B. (1999). Mortality and causes of death in pervasive developmental disorders. Autism, 3, 7–16.

    Article  Google Scholar 

  • Kobayashi, R., Murata, T., & Yoshinaga, K. (1992). A follow-up study of 201 children with autism in Kyushu and Yamaguchi areas, Japan. Journal of Autism and Developmental Disorders, 22(3), 395–411.

    Article  PubMed  Google Scholar 

  • Larsson, H. J., Eaton, W. W., Madsen, K. M., Vestergaard, M., Olesen, A. V., Agerbo, E., et al. (2006). Risk factors for autism: Perinatal factors, parental psychiatric history, and socioeconomic status. American Journal of Epidemiology, 161(10), 916–925.

    Article  Google Scholar 

  • Miller, J. S., Bilder, D., Farley, M., Coon, H., Pinborough-Zimmerman, J., Jenson, W., et al. (2012). Autism spectrum disorder reclassified: A second look at the 1980’s Utah/UCLA Autism Epidemiologic Study. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-012-1566-0.

  • Mouridsen, S. E., & Brønnum-Hansen, H. (2008). Mortality and causes of death in autism spectrum disorders: An update. Autism, 12(4), 403–414.

    Article  PubMed  Google Scholar 

  • Pellock, J. (2004). Understanding co-morbidities affecting children with epilepsy. Neurology, 62(supplement 2), S17–S23.

    Article  PubMed  Google Scholar 

  • Pickett, J. A., Paculdo, D. R., Shavelle, R. M., & Strauss, D. J. (2006). 1998–2002 Update on “Causes of Death in Autism”. Journal of Autism and Developmental Disorders, 36, 287–288.

    Article  PubMed  Google Scholar 

  • Pickett, J., Xiu, E., Tuchman, R., Dawson, G., & Lajonchere, C. (2011). Mortality in individuals with autism, with and without epilepsy. Journal of Child Neurology, 26(8), 932–939.

    Article  PubMed  Google Scholar 

  • Pinborough-Zimmerman, J., Bakian, A., Fombonne, E., Bilder, D., Taylor, J., & McMahon, W. M. (2012). Changes in the administrative prevalence of autism spectrum disorders: Contribution of special education and health data from 2002–2008. Journal of Autism and Developmental Disorders, 42, 521–530.

    Google Scholar 

  • Rice, C. E., Baio, J., Van Naarden Braun, K., Doernberg, N., Meaney, F. J., Kirby, R. S., et al. (2007). A public health collaboration for the surveillance of autism spectrum disorders. Paediatric and Perinatal Epidemiology, 21(2), 179–190.

    Article  PubMed  Google Scholar 

  • Ritvo, E. R., Freeman, B. J., Pingree, C., Mason-Brothers, A., Jorde, L., Jenson, W. R., et al. (1989). The UCLA-University of Utah epidemiologic survey of autism: Prevalence. American Journal of Psychiatry, 146(2), 194–199.

    PubMed  Google Scholar 

  • Ritvo, E. R., Mason-Brothers, A., Freeman, B. J., Pingree, C., Jenson, W. R., McMahon, W. M., et al. (1990). The UCLA-University of Utah epidemiologic survey of autism: The etiologic role of rare diseases. American Journal of Psychiatry, 147(12), 1614–1621.

    PubMed  Google Scholar 

  • Shavelle, R. M., Strauss, D. J., & Pickett, J. (2001). Causes of death in autism. Journal of Autism and Developmental Disorders, 31, 569–576.

    Article  PubMed  Google Scholar 

  • Symons, M. J., & Moore, D. T. (2002). Hazard rate ratio and prospective epidemiological studies. Journal of Clinical Epidemiology, 55(9), 893–899.

    Article  PubMed  Google Scholar 

  • Utah Department of Health. (2005). Utah health status update: Adjusting Utah’s state health ranking for age [PDF]. Retrieved from

  • Van Naarden Braun, K., Pettygrove, S., Daniels, J., Miller, L., Nicholas, J., Baio, 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. Surveillance Summaries: Morbidity and Mortality Weekly Report, 56(1), 29–40.

    Google Scholar 

  • Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. JAMA. Journal of the American Medical Association, 289(1), 49–55.

    Article  PubMed  Google Scholar 

Download references


This research was supported by Autism Speaks Grant #5955. We thank the Pedigree and Population Resource (funded by the Huntsman Cancer Foundation) for its role in the ongoing collection, maintenance, and support of the Utah Population Database (UPDB).

Author information

Authors and Affiliations


Corresponding author

Correspondence to Deborah Bilder.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Bilder, D., Botts, E.L., Smith, K.R. et al. Excess Mortality and Causes of Death in Autism Spectrum Disorders: A Follow up of the 1980s Utah/UCLA Autism Epidemiologic Study. J Autism Dev Disord 43, 1196–1204 (2013).

Download citation

  • Published:

  • Issue Date:

  • DOI: