Premature mortality in autism spectrum disorder
Open accessAbstract
Background: Mortality has been suggested to be increased in autism spectrum disorder (ASD). Aims: To examine both all-cause and cause-specific mortality in ASD, as well as investigate moderating role of gender and intellectual ability. Method: Odds ratios (ORs) were calculated for a population-based cohort of ASD probands (n = 27 122, diagnosed between 1987 and 2009) compared with gender-, age- and county of residence-matched controls (n = 2 672 185). Results: During the observed period, 24 358 (0.91%) individuals in the general population died, whereas the corresponding figure for individuals with ASD was 706 (2.60%; OR = 2.56; 95% CI 2.38–2.76). Cause-specific analyses showed elevated mortality in ASD for almost all analysed diagnostic categories. Mortality and patterns for cause-specific mortality were partly moderated by gender and general intellectual ability. Conclusions: Premature mortality was markedly increased in ASD owing to a multitude of medical conditions.
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Population-based data on suicide from more than 27,000 adults suggested an odds ratio greater than 7 for autistic adults, with suicide risk especially high for autistic women and those without intellectual disability.
“population-based data on suicide (from >27,000 adults) suggested an odds ratio >7 for autistic adults, with suicide risk being especially high for autistic women and those without intellectual disability (Hirvikoski et al, 2016).”
From Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research (2020) · cites this paper as Hirvikoski et al, 2016
The Method and Table 2 report a population-based cohort of 27,122 autistic people, but not an exclusively adult cohort; the mean age at first registered diagnosis was 19.83 years. The cause-specific mortality results report a suicide OR of 7.55, higher relative suicide mortality for females than males, and higher suicide risk in the high-functioning group than the low-functioning group. Thus the suicide findings are supported, but describing all 27,122 participants as adults is not. (LLM, conf=0.90)
Experimental — accuracy not yet measuredTwo population-based cohort studies led in Denmark and Sweden reported respectively a 3.7 and a 9-fold increase in death by suicide among autistic adults without ID compared to the general population.
“More generally, two population-based cohort studies led in Denmark and Sweden highlighted the importance of this problem in autistic individuals, as they reported respectively a 3.7 and a 9-fold increase in death by suicide among autistic adults without ID compared to the general population (Hirvikoski et al., 2016; Kõlves et al., 2021).”
From Feasibility, Acceptability and Preliminary Efficacy of Dialectical Behavior Therapy for Autistic Adults without Intellectual Disability: A Mixed Methods Study (2022) · cites this paper as Hirvikoski et al., 2016
Table 4 (Clinical implications; page unavailable) reports a suicide-mortality odds ratio of 9.40 (95% CI 7.43–11.90) for the Swedish high-functioning ASD group versus controls, supporting the approximately ninefold figure for autistic people without intellectual disability. The estimate is not restricted to adults, so the paper does not establish that figure specifically for autistic adults. The Danish 3.7-fold figure is attributed to the other cited study, not assessed here. (LLM, conf=0.84)
Experimental — accuracy not yet measuredAutistic people experience significant health disparities and reduced life expectancy.
“Autistic people experience significant health disparities and reduced life expectancy (Hirvikoski et al, 2016).”
From Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings (2023) · cites this paper as Hirvikoski et al, 2016
Autistic people have a 7-fold increase in suicide rate across the range of autistic profiles and support needs, and up to a 40-fold increase in mortality from neurological conditions such as epilepsy.
“The 7-fold increase in suicide rate across the range of autistic profiles and support needs, and up to 40-fold increase in mortality from neurological conditions such as epilepsy, are shocking.”
From Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings (2023) · cites this paper as Hirvikoski et al, 2016
Autistic people are more likely to experience premature death.
“They are also more likely to experience premature death (Hirvikoski et al., 2016).”
From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as Hirvikoski et al., 2016
Premature death by suicide is 7 times more common in persons with autism spectrum disorder.
“Premature death by suicide is 7 times more often in persons with ASD [4].”
Autism is associated with poor mental health; many autistic persons experience clinical levels of anxiety and depression, and suicide rates are strikingly high.
“Relatedly, autism is associated with poor mental health.For instance, many autistic persons experience clinical levels of anxiety and depression (Stewart et al., 2006), and suicide rates are strikingly high (Hirvikoski et al., 2016).”
From Neurodiversity, epistemic injustice, and the good human life (2022) · cites this paper as Hirvikoski et al., 2016
A number of groups have begun to test community delivery of early intervention in low-income and middle-income settings.
“although a number of groups have begun to test community delivery of early intervention in such settings 173”
From Autism spectrum disorder (2020) · cites this paper as [173]
The Discussion (page not specified) calls for support and interventions beyond paediatric and early education, but does not report groups testing community delivery. The Strengths and limitations section (page not specified) cautions that findings from the Swedish study may not generalise to countries with different healthcare systems. Searches for community delivery and early intervention in low- and middle-income settings found no passage addressing the claim. (LLM, conf=0.78)
Experimental — accuracy not yet measuredPopulation-based studies show higher rates of suicide in autistic females than autistic males, particularly among individuals in the average IQ range with co-occurring ADHD.
“Alternatively, population-based studies have shown higher rates of suicide in autistic females than in autistic males85,86, and this finding is particularly pronounced among individuals who are in the average IQ range and have co-occurring ADHD87.”
From Sex and gender in neurodevelopmental conditions (2023) · cites this paper as [85]
Autistic males have higher mortality risk from circulatory and nervous system diseases, cancer, and external causes; autistic females have higher risk from similar causes plus endocrine diseases and congenital malformations compared with sex-matched non-autistic counterparts.
“For example, autistic males have a higher mortality risk from diseases of the circulatory and nervous systems and cancer, and from external causes, and autistic females have a higher risk from similar causes but also from endocrine diseases and congenital malformations compared with sex-matched non-autistic counterparts85,87–89.”
From Sex and gender in neurodevelopmental conditions (2023) · cites this paper as [85]
In clinical cases, other neurodevelopmental conditions, psychiatric disorders and somatic disorders are often co-occurring complications.
“In clinical cases, other neurodevelopmental conditions, psychiatric disorders and somatic disorders are often co-occurring complications [13–15].”
From The contribution of environmental exposure to the etiology of autism spectrum disorder (2019) · cites this paper as [13]
Autistic people were significantly more likely to die by suicide (0.31%) compared to the general population (0.04%) in a Swedish population study.
“Only one study has ever explored whether autistic people are more at risk of dying by suicide than the general population; this population study in Sweden showed that autistic people were significantly more likely to die by suicide (0.31%) compared to the general population (0.04%) [15].”
From Risk markers for suicidality in autistic adults (2018) · cites this paper as [15]
In one available study, autistic females without ID were more at risk of dying by suicide (0.32%) compared to autistic males (0.3%), opposite to the general population.
“However, in the one available study exploring death by suicide in the autistic community, autistic females without intellectual disability (ID) were more at risk of dying by suicide (0.32%) compared to autistic males (0.3%); opposite to the general population where males (0.05%) were more likely to die by suicide than females (0.03%) [15].”
From Risk markers for suicidality in autistic adults (2018) · cites this paper as [15]
Individuals with ASD are at a heightened risk of long-term physical health conditions and premature mortality.
“Evidence suggests that individuals with ASD are at a heightened risk of long-term physical health conditions and premature mortality, [19][20][21] but the reasons for this remain unclear.”
From Avoidant/Restrictive Food Intake Disorder and Severe Food Selectivity in Children and Young People with Autism: A Scoping Review (2022) · cites this paper as [20]
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Cassidy, S. A., Bradley, L., Bowen, E., Wigham, S., & Rodgers, J. (2018) · Autism Research · doi:10.1002/aur.1922 · Cited by 144 · see citing works
“Studies have also highlighted high rates of depression in adults with ASC [e.g., Cassidy et al., 2014; Hofvander et al., 2009].”
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Understanding and prevention of suicide in autism
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“Given the higher risk of death by suicide in autistic adults, without ID (Hirvikoski et al., 2016), we focused the search on adults without ID.”
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“Premature mortality was markedly increased in ASD owing to a multitude of medical conditions; women had a higher relative mortality risk than men due to endocrine diseases, congenital malformations, and suicide.(15) In a clinical setting, there is a common occurrence of overlapping symptoms of ADHD in ASD cases and cl…”
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Neurological disorders in autism: A systematic review and meta-analysis
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What are the autism research priorities of autistic adults in Scotland?
Cage, E., Crompton, C. J., Dantas, S., Strachan, K., Birch, R., Robinson, M., Morgan-Appel, S., MacKenzie-Nash, C., Gallagher, A., & Botha, M. (2024) · Autism · doi:10.1177/13623613231222656 · Cited by 79 · see citing works
“…challenges, including addressing high suicide rates (Cassidy & Rodgers, 2017), health disparities (Kinnear et al., 2019; Weir et al., 2022), early mortality (Hirvikoski et al., 2016), disproportionate victimisation (Griffiths et al., 2019) and dehumanisation of autistic people (Cage et al., 2019).”
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Links between self-injury and suicidality in autism
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Lifetime and perceived stress, social support, loneliness, and health in autistic adults.
Moseley, R. L., Turner-Cobb, J. M., Spahr, C. M., Shields, G. S., & Slavich, G. M. (2021) · Health Psychology · doi:10.1037/hea0001108 · Cited by 71 · see citing works
Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism
Cassidy, S. A., Robertson, A., Townsend, E., O’Connor, R. C., & Rodgers, J. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04643-9 · Cited by 68 · see citing works
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How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability?
Bradshaw, P., Pellicano, E., van Driel, M., & Urbanowicz, A. (2019) · Current Developmental Disorders Reports · doi:10.1007/s40474-019-00159-9 · Cited by 60 · see citing works
Autism Spectrum Disorder and Transition-Aged Youth
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Six ideas about how to address the autism mental health crisis
Mandy, W. (2022) · Autism · doi:10.1177/13623613211067928 · Cited by 60 · see citing works
Pantazakos, T., & Vanaken, G.-J. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2023.1225152 · Cited by 59 · see citing works
“Suicide was the only cause of death more common among autistic people without versus with an intellectual disability (Hirvikoski et al., 2016).”
BackgroundAn investigation of the diet, exercise, sleep, BMI, and health outcomes of autistic adults
Weir, E., Allison, C., Ong, K. K., & Baron-Cohen, S. (2021) · Molecular Autism · doi:10.1186/s13229-021-00441-x · Cited by 58 · see citing works
Treatment of Depression in Individuals with Autism Spectrum Disorder: A Systematic Review
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Alexithymia may explain the relationship between autistic traits and eating disorder psychopathology
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“Our results are, to a great extent, in line with the earlier studies on adults with ASD, which have shown that concomitant psychiatric symptoms and diagnoses are common (Hutton et al. 2008; Hofvander et al. 2009; Buck et al. 2014; Hirvikoski et al. 2016; Helles et al. 2015), also when compared to other psychiatrically…”
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Recognising autism in healthcare
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Racial/Ethnic Differences in Psychiatric and Medical Diagnoses Among Autistic Adults
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Physical Activity Design for Balance Rehabilitation in Children with Autism Spectrum Disorder
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Premature mortality in a population‐based cohort of autistic adults in Canada
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“Neurodivergent individuals have a decreased life expectancy of up to 30 years 3 , and experience substantial barriers to effective healthcare 4 .”
- Authors
- Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S.
- Affiliations
- Region Stockholm (SE)
- Corresponding author
- Hirvikoski, Tatja
- Venue
- British Journal of Psychiatry
- Publisher
- Royal College of Psychiatrists
- Published
- 2016-03
- Volume
- 208
- Issue
- 3
- Pages
- 232-238
- ISSN
- 0007-1250 (ISSN-L)
- 1472-1465
- OpenAlex
- W2168424072
- Semantic Scholar
- d4cae0b1efaaaf1e6d4ad452636ea6a898bb7e67
- Cited by
- 1,011
- References
- 35
- Citations by year
- 2026: 88 · 2025: 145 · 2024: 111 · 2023: 136 · 2022: 131 · 2021: 128 · 2020: 101 · 2019: 80 · 2018: 47 · 2017: 33 · 2016: 10
- FWCI
- 18.05
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- The British Journal of Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- eSpace (Curtin University) (submittedVersion)
- Funders
- Svenska Forskningsrådet Formas (259-2012-24, 523-2009-7054)
- Karolinska Institutet
- Stockholms Läns Landsting (20130630)
- Vetenskapsrådet (523‐2009‐7054, 259-2012-24)
- Forskningsrådet om Hälsa, Arbetsliv och Välfärd (259-2012-24)
- 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
- Social Sciences › Psychology › Clinical Psychology › Suicide and Self-Harm Studies
- Keywords
- autism spectrum disorder, premature mortality, all-cause mortality, cause-specific mortality, gender differences, intellectual ability, comorbidities
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Aged, Aged, 80 and over, Cause of Death, Child, Child, Preschool, Female, Humans, Male, Middle Aged, Registries, Risk Factors, Sweden, Logistic Models, Odds Ratio, Case-Control Studies, Sex Distribution, Young Adult, Mortality, Premature
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