A systematic review of two outcomes in autism spectrum disorder: epilepsy and mortality.
Open accessAbstract
Aim It has been reported that rates of epilepsy and mortality are higher among the population with autism spectrum disorder (ASD) than in the general population. The aim of this systematic review is to provide comprehensive evidence for clinicians, carers, and people with ASD regarding these outcomes. Method Studies were eligible for inclusion if the main focus of the study involved observation over a period of 12 months or more of an initially defined population (with appropriate diagnostic label). Studies were also required to have at least 30 participants in order to differentiate case series from cohort studies. The Cochrane Database of Systematic Reviews, the Database of Reviews of Effectiveness, MEDLINE, PsycINFO, EMBASE, and CINAHL were searched. The date of the last search was September 2010. The risk of bias of included studies was assessed and a meta‐analysis was undertaken. Results Twenty‐one studies were identified, 16 measuring the percentage of participants with epilepsy and five measuring mortality using a standardized mortality ratio. The pooled estimate for the percentage of participants with epilepsy was 1.8% (95% CI 0.4–9.4%) in studies in which the majority did not have an intellectual disability and the mean age was <12 years at follow‐up, and 23.7% (95% CI 17.5–30.5%) in studies in which the majority did have an intellectual disability and the mean age at follow‐up was more than 12 years. The pooled estimate for the standardized mortality ratio was 2.8 (95% CI 1.8–4.2). Interpretation The prevalence of epilepsy is higher among the population with ASD than in the general population. People with ASD have a higher risk of mortality than the general population. This has important health promotion implications.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The prevalence of epilepsy in autism spectrum disorder doubles in adolescence (26%) compared to childhood (12%).
“with the prevalence of epilepsy in ASD doubling in adolescence (26%) compared to childhood (12%) (Hara, 2007; Woolfenden et al., 2012; Sharma et al., 2021).”
From Tauopathy and Epilepsy Comorbidities and Underlying Mechanisms (2022) · cites this paper as Woolfenden et al., 2012
The Abstract says epilepsy prevalence in ASD is highest in adolescence and young adulthood. However, the 'Pooled estimate of percentage of participants with epilepsy at follow-up' section reports age-group estimates stratified by intellectual disability—not 12% in childhood and 26% in adolescence—and does not establish a doubling from those figures. No page number was provided for the indexed passages. (LLM, conf=0.88)
Experimental — accuracy not yet measuredA prior systematic review of studies published until 2010 located only 5 studies investigating mortality associations in ASD, so lack of data precluded exploring potential variations in all-cause mortality and quantifying cause-specific mortality risks.
“A systematic review20 of studies published until 2010 examined ASD and 2 outcomes (epilepsy and mortality). Only 5 studies investigating mortality associations were located,20 so lack of data precluded exploring potential variations in all-cause mortality and quantifying cause-specific mortality risks.”
From Mortality in Persons With Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-analysis (2022) · cites this paper as [20]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Diagnostic and Statistical Manual of Mental Disorders
Williams, J. B. W., & First, M. B. (2013) · Oxford University Press eBooks · doi:10.1093/acrefore/9780199975839.013.104 · Cited by 109,841 · see citing works
Meta-analysis in clinical trials
DerSimonian, R., & Laird, N. (1986) · Controlled Clinical Trials · doi:10.1016/0197-2456(86)90046-2 · Cited by 39,552 · see citing works
Quantifying heterogeneity in a meta‐analysis
Higgins, J. P. T., & Thompson, S. G. (2002) · Statistics in Medicine · doi:10.1002/sim.1186 · Cited by 36,763 · see citing works
Diagnostic and Statistical Manual of Mental Disorders.
Widiger, T. A. (2000) · Oxford University Press eBooks · doi:10.1037/10518-009 · Cited by 19,767 · see citing works
Transformations Related to the Angular and the Square Root
Freeman, M. F., & Tukey, J. W. (1950) · The Annals of Mathematical Statistics · doi:10.1214/aoms/1177729756 · Cited by 2,634 · see citing works
Epidemiology of Pervasive Developmental Disorders
Fombonne, E. (2009) · Pediatric Research · doi:10.1203/pdr.0b013e31819e7203 · Cited by 1,971 · see citing works
Adult outcome for children with autism
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004) · Journal of Child Psychology and Psychiatry · doi:10.1111/j.1469-7610.2004.00215.x · Cited by 1,813 · see citing works
Evaluation of the Quality of Prognosis Studies in Systematic Reviews
Hayden, J. A., Côté, P., & Bombardier, C. (2006) · Annals of Internal Medicine · doi:10.7326/0003-4819-144-6-200603210-00010 · Cited by 1,452 · see citing works
Diagnostic and Statistical Manual of Mental Disorders
Preedy, V., & Watson, R. (2010) · Springer eBooks · doi:10.1007/978-0-387-78665-0_5485 · Cited by 1,146 · see citing works
Billstedt, E., Gillberg, C., & Gillberg, C. (2005) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-005-3302-5 · Cited by 783 · see citing works
Tuchman, R. F., & Rapin, I. (2002) · The Lancet Neurology · doi:10.1016/s1474-4422(02)00160-6 · Cited by 713 · see citing works
Young Adult Outcome of Autism Spectrum Disorders
Eaves, L. C., & Ho, H. H. (2008) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-007-0441-x · Cited by 683 · see citing works
Levy, S. E., Mandell, D. S., & Schultz, R. T. (2009) · The Lancet · doi:10.1016/s0140-6736(09)61376-3 · Cited by 651 · see citing works
A Follow‐Up Study of High‐Functioning Autistic Children
Venter, A., Lord, C., & Schopler, E. (1992) · Journal of Child Psychology and Psychiatry · doi:10.1111/j.1469-7610.1992.tb00887.x · Cited by 527 · see citing works
The Inverse of the Freeman – Tukey Double Arcsine Transformation
Miller, J. J. (1978) · The American Statistician · doi:10.1080/00031305.1978.10479283 · Cited by 501 · see citing works
Amiet, C., Gourfinkel-An, I., Bouzamondo, A., Tordjman, S., Baulac, M., Lechat, P., Mottron, L., & Cohen, D. (2008) · Biological Psychiatry · doi:10.1016/j.biopsych.2008.04.030 · Cited by 499 · see citing works
Health inequalities and people with learning disabilities in the UK
Emerson, E., & Baines, S. (2011) · Tizard Learning Disability Review · doi:10.5042/tldr.2011.0008 · Cited by 350 · see citing works
Wilczynski, N. L., Haynes, R. B., & the Hedges Team (2004) · BMC Medicine · doi:10.1186/1741-7015-2-23 · Cited by 291 · see citing works
The long-term risk of premature mortality in people with epilepsy
Neligan, A., Bell, G. S., Johnson, A. L., Goodridge, D. M., Shorvon, S. D., & Sander, J. W. A. S. (2011) · Brain · doi:10.1093/brain/awq378 · Cited by 253 · see citing works
Autism and epilepsy: A retrospective follow-up study
Hara, H. (2007) · Brain and Development · doi:10.1016/j.braindev.2006.12.012 · Cited by 242 · see citing works
ILAE classification of epilepsy syndromes
Engel, J. (2006) · Epilepsy Research · doi:10.1016/j.eplepsyres.2005.11.014 · Cited by 227 · see citing works
Ballaban‐Gil, K. R., Rapin, I., Tuchman, R. F., & Shinnar, S. (1996) · Pediatric Neurology · doi:10.1016/s0887-8994(96)00219-6 · Cited by 217 · see citing works
Shavelle, R. M., Strauss, D. J., & Pickett, J. (2001) · Journal of Autism and Developmental Disorders · doi:10.1023/a:1013247011483 · Cited by 211 · see citing works
Lounds, J. J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. T. (2007) · American Journal on Mental Retardation · doi:10.1352/0895-8017(2007)112[401:taciaa]2.0.co;2 · Cited by 211 · see citing works
Oeseburg, B., Dijkstra, G. J., Groothoff, J. W., Reijneveld, S. A., & Jansen, D. E. M. C. (2011) · Intellectual and developmental disabilities · doi:10.1352/1934-9556-49.2.59 · Cited by 207 · see citing works
A follow-up study of 201 children with autism in Kyushu and Yamaguchi areas, Japan
Kobayashi, R., Murata, T., & Yoshinaga, K. (1992) · Journal of Autism and Developmental Disorders · doi:10.1007/bf01048242 · Cited by 192 · see citing works
Mortality and causes of death in autism spectrum disorders: An update
Mouridsen, S. E., Brønnum-Hansen, H., Rich, B., & Isager, T. (2008) · Autism · doi:10.1177/1362361308091653 · Cited by 172 · see citing works
Burneo, J. G., Jetté, N., Theodore, W. H., Begley, C. E., Parko, K., Thurman, D. J., Wiebe, S., & for the Task Force on Disparities in Epilepsy Care, O. B. O. T. N. A. C. O. T. I. L. A. E. (2009) · Epilepsia · doi:10.1111/j.1528-1167.2009.02282.x · Cited by 171 · see citing works
Influence of Epilepsy on Mortality in Mental Retardation: An Epidemiologic Study
Forsgren, L., Edvinsson, S., Nyström, L., & Blomquist, H. K. S. (1996) · Epilepsia · doi:10.1111/j.1528-1157.1996.tb00533.x · Cited by 141 · see citing works
Mortality in Autism: A Prospective Longitudinal Community-Based Study
Gillberg, C., Billstedt, E., Sundh, V., & Gillberg, I. C. (2009) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-009-0883-4 · Cited by 129 · see citing works
The Inverse of the Freeman-Tukey Double Arcsine Transformation
Miller, J. J. (1978) · The American Statistician · doi:10.2307/2682942 · Cited by 127 · see citing works
Kawasaki, Y., Yokota, K., Shinomiya, M., Shimizu, Y., & Niwa, S. (1997) · Journal of Autism and Developmental Disorders · doi:10.1023/a:1025886228387 · Cited by 85 · see citing works
Health inequalities and people with learning disabilities in the UK
Emerson, E., Baines, S., Allerton, L. A., & Welch, V. (2011) · Strathprints: The University of Strathclyde institutional repository (University of Strathclyde) · Cited by 72 · see citing works
Jonsdottir, S. L., Sæmundsen, E., Ásmundsdóttir, G., Hjartardóttir, S., Ásgeirsdóttir, B. B., Smáradóttir, H. H., Sigurðardóttir, S., & Smári, J. (2006) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-006-0282-z · Cited by 59 · see citing works
Mortality and Causes of Death in Pervasive Developmental Disorders
Isager, T., Mouridsen, S. E., & Rich, B. (1999) · Autism · doi:10.1177/1362361399003001002 · Cited by 56 · see citing works
Baghdadli, A., Picot, M., Michelon, C., Bodet, J., Pernon, É., Burstezjn, C., Hochmann, J., Lazartigues, A., Pry, R., & Aussilloux, C. (2006) · Acta Psychiatrica Scandinavica · doi:10.1111/j.1600-0447.2006.00898.x · Cited by 51 · see citing works
Autistic Children Grow Up: An Eight to Twenty-Four Year Follow-Up Study
Wolf, L. C., & Goldberg, B. (1986) · The Canadian Journal of Psychiatry · doi:10.1177/070674378603100613 · Cited by 50 · see citing works
Pickett, J. A., Paculdo, D. R., Shavelle, R. M., & Strauss, D. J. (2006) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-005-0066-x · Cited by 45 · cited 2× · see citing works
“Combining the three studies of Pickettet al.(34) Gillberg et al.”
BackgroundTakeda, T., Koyama, T., Kanai, C., & Kurita, H. (2005) · Psychiatry and Clinical Neurosciences · doi:10.1111/j.1440-1819.2005.01442.x · Cited by 15 · see citing works
Prospective Long-Term Follow-Up of Patients With Pervasive Developmental Disorders
Burd, L., Kerbeshian, J., Westerland, A., Labine, J., Barth, A. E., Klug, M. G., & Wagner, K. V. (2002) · Journal of Child Neurology · doi:10.1177/088307380201700906 · Cited by 13 · see citing works
Mouridsen, S. E., Rich, B., & Isager, T. (1999) · Brain and Development · doi:10.1016/s0387-7604(99)00045-5 · Cited by 11 · see citing works
Orsmond, G. I., Seltzer, M. M., Krauss, M. W., & Hong, J. (2003) · American Journal on Mental Retardation · doi:10.1352/0895-8017(2003)108
Flagged first, then by citations
Research works printed but not linked: 3
- Levy SE, Mandell DS, Schultz RT. Autism. Lancet 2009; 374: 1627-38.
- Pickett JA, Paculdo DR, Shavelle RM, Strauss DJ. 1998- 2002 update on 'causes of death in autism'. J Autism Dev Disord 2006; 36: 287-8.
- Morgan C, Baxter H, Kerr M, MacLean W. Prevalence of epilepsy and associated health service utilization and mortal- ity among patients with intellectual disability. Am J Ment Retard 2003; 108: 293-300.
Cited by
Sorted by citations
Lai, M.-C., Lombardo, M. V., & Baron-Cohen, S. (2014) · The Lancet · doi:10.1016/s0140-6736(13)61539-1 · Cited by 2,371 · see citing works
Risks of all-cause and suicide mortality in mental disorders: a meta-review
Chesney, E., Goodwin, G. M., & Fazel, S. (2014) · World Psychiatry · doi:10.1002/wps.20128 · Cited by 2,115 · see citing works
Identification, Evaluation, and Management of Children With Autism Spectrum Disorder
Hyman, S. L., Levy, S. E., Myers, S. M., COUNCIL ON CHILDREN WITH DISABILITIES, S. O. D. A. B. P., Kuo, D. Z., Apkon, S., Davidson, L. F., Ellerbeck, K. A., Foster, J. E. A., Noritz, G. H., et al. (2020) · Pediatrics · doi:10.1542/peds.2019-3447 · Cited by 1,548 · see citing works
Premature mortality in autism spectrum disorder
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016) · British Journal of Psychiatry · doi:10.1192/bjp.bp.114.160192 · Cited by 1,011 · see citing works
An Overview of Autism Spectrum Disorder, Heterogeneity and Treatment Options
Masi, A., DeMayo, M. M., Glozier, N., & Guastella, A. J. (2017) · Neuroscience Bulletin · doi:10.1007/s12264-017-0100-y · Cited by 987 · see citing works
The Lancet Commission on the future of care and clinical research in autism
Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., Carr, T., de Vries, P. J., Dissanayake, C., Divan, G., et al. (2022) · The Lancet · doi:10.1016/s0140-6736(21)01541-5 · Cited by 924 · see citing works
IL-6 regulation of synaptic function in the CNS
Gruol, D. L. (2015) · Neuropharmacology · doi:10.1016/j.neuropharm.2014.10.023 · Cited by 254 · see citing works
Tye, C., Runicles, A. K., Whitehouse, A. J. O., & Alvares, G. A. (2019) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2018.00751 · Cited by 177 · see citing works
Nutritional Status of Individuals with Autism Spectrum Disorders: Do We Know Enough?
Ranjan, S., & Nasser, J. A. (2015) · Advances in Nutrition · doi:10.3945/an.114.007914 · Cited by 173 · see citing works
Jack, A., & A. Pelphrey, K. (2017) · Journal of Child Psychology and Psychiatry · doi:10.1111/jcpp.12687 · Cited by 159 · see citing works
Strasser, L., Downes, M., Kung, J., Cross, J. H., & De Haan, M. (2018) · Developmental Medicine & Child Neurology · doi:10.1111/dmcn.13598 · Cited by 148 · see citing works
Catalá-López, F., Hutton, B., Page, M. J., Driver, J. A., Ridao, M., Alonso-Arroyo, A., Valencia, A., Macías Saint-Gerons, D., & Tabarés-Seisdedos, R. (2022) · JAMA Pediatrics · doi:10.1001/jamapediatrics.2021.6401 · Cited by 148 · see citing works
Mortality and cause of death of Australians on the autism spectrum
Hwang, Y. I. (., Srasuebkul, P., Foley, K., Arnold, S., & Trollor, J. N. (2019) · Autism Research · doi:10.1002/aur.2086 · Cited by 144 · see citing works
Walsh, C., Lydon, S., O’Dowd, E., & O’Connor, P. (2020) · Developmental Neurorehabilitation · doi:10.1080/17518423.2020.1716868 · Cited by 107 · see citing works
Neurological disorders in autism: A systematic review and meta-analysis
Pan, P.-Y., Bölte, S., Kaur, P., Jamil, S., & Jonsson, U. (2021) · Autism · doi:10.1177/1362361320951370 · Cited by 83 · see citing works
Rydzewska, E., Dunn, K., & Cooper, S.-A. (2021) · The British Journal of Psychiatry · doi:10.1192/bjp.2020.167 · Cited by 81 · see citing works
Diallo, F. B., Fombonne, É., Kisely, S., Rochette, L., Vasiliadis, H.-M., Vanasse, A., Noiseux, M., Pelletier, É., Renaud, J., St-Laurent, D., et al. (2018) · The Canadian Journal of Psychiatry · doi:10.1177/0706743717737031 · Cited by 72 · see citing works
Vargason, T., Frye, R. E., McGuinness, D. L., & Hahn, J. (2019) · Autism Research · doi:10.1002/aur.2128 · Cited by 59 · see citing works
Wegiel, J., Flory, M., Kuchna, I., Nowicki, K., Ma, S. Y., Imaki, H., Wegiel, J., Frackowiak, J., Kolecka, B. M., Wierzba-Bobrowicz, T., et al. (2015) · Acta Neuropathologica Communications · doi:10.1186/s40478-015-0183-5 · Cited by 47 · see citing works
Tauopathy and Epilepsy Comorbidities and Underlying Mechanisms
Hwang, K., Vaknalli, R. N., Addo-Osafo, K., Vicente, M., & Vossel, K. (2022) · Frontiers in Aging Neuroscience · doi:10.3389/fnagi.2022.903973 · Cited by 35 · see citing works
Premature mortality in a population‐based cohort of autistic adults in Canada
Lunsky, Y., Lai, M., Balogh, R., Chung, H., Durbin, A., Jachyra, P., Tint, A., Weiss, J., & Lin, E. (2022) · Autism Research · doi:10.1002/aur.2741 · Cited by 26 · see citing works
Mortality in 787,666 school pupils with and without autism: a cohort study.
Smith, G. S., Fleming, M., Kinnear, D., Henderson, A., Pell, J. P., Melville, C., & Cooper, S.-A. (2021) · Autism · doi:10.1177/1362361320944037 · Cited by 15 · see citing works
Catalá-López, F., Hutton, B., Page, M. J., Ridao, M., Driver, J. A., Alonso-Arroyo, A., Forés-Martos, J., Macías Saint-Gerons, D., Vieta, E., Valencia, A., et al. (2017) · Systematic Reviews · doi:10.1186/s13643-017-0581-9 · Cited by 11 · see citing works
Anderson, M. P., Quinton, R., Kelly, K., Falzon, A., Halladay, A., Schumann, C. M., Hof, P. R., Tamminga, C. A., Hare, C. K., & Amaral, D. G. (2021) · Archives of Pathology & Laboratory Medicine · doi:10.5858/arpa.2020-0164-ra · Cited by 4 · see citing works
- Authors
- WOOLFENDEN, S., SARKOZY, V., RIDLEY, G., COORY, M., & WILLIAMS, K.
- Affiliations
- UNSW Sydney (AU)
- Sydney Children's Hospital (AU)
- The University of Melbourne (AU)
- Royal Children's Hospital (AU)
- Venue
- Developmental Medicine & Child Neurology
- Publisher
- Wiley
- Published
- 2012-02-21
- Volume
- 54
- Issue
- 4
- Pages
- 306-312
- ISSN
- 0012-1622 (ISSN-L)
- 1469-8749
- OpenAlex
- W2009058595
- Cited by
- 206
- References
- 42
- Citations by year
- 2026: 7 · 2025: 9 · 2024: 16 · 2023: 20 · 2022: 22 · 2021: 17 · 2020: 20 · 2019: 14 · 2018: 10 · 2017: 17 · 2016: 16 · 2015: 15 · 2014: 11 · 2013: 10 · 2012: 2
- FWCI
- 0.96
- Type
- journal article
- Language
- en
- Update notices
- erratum (2012-06-14)
- Open access
- bronze
- doi.org
- Locations
- Developmental Medicine & Child Neurology (publishedVersion)
- PubMed (publishedVersion)
- Griffith Research Online (submittedVersion)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- autism spectrum disorder, epilepsy, mortality, standardized mortality ratio, intellectual disability, comorbidities, health outcomes
- MeSH terms
- Adolescent, Cause of Death, Child, Child Development Disorders, Pervasive, Child, Preschool, Epilepsy, Humans, Risk Factors, Databases, Bibliographic, Outcome Assessment, Health Care
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review