Premature mortality in a population‐based cohort of autistic adults in Canada

Lunsky, Yona; Lai, Meng‐Chuan; Balogh, Robert; Chung, Hannah; Durbin, Anna; Jachyra, Patrick; Tint, Ami; Weiss, Jonathan A.; Lin, Elizabeth

doi:10.1002/aur.2741

Cited by 13 publications

(5 citation statements)

References 47 publications

(85 reference statements)

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“…The implication of this is that no single cohort or sample is “representative” of the broad spectrum of abilities, experiences, and outcomes captured under a diagnosis of autism. Further, these samples of autistic adults and related findings may be impacted by other biases, including ascertainment bias in identifying autistic individuals (e.g., an underrepresentation in research of autistic individuals with ID; [ 103 ]) and healthy survivor effects [ 104 , 105 , 106 ]. Autistic individuals diagnosed in adulthood are likely over-represented in aging research, with some samples reporting a mean age of diagnosis as late as in their 50s (e.g., [ 67 ]).…”

Section: Discussionmentioning

confidence: 99%

Aging Well and Autism: A Narrative Review and Recommendations for Future Research

Klein,

Klinger

2024

Healthcare

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With autism first recognized in the 1940s, the early cohorts of autistic children are beginning to enter older adulthood. Little is known about the experiences and outcomes of autistic older adults. In the general population, “successful aging” is a dominant model among gerontologists and is used to evaluate outcomes in older adulthood. This narrative review aims to provide a framework for understanding and supporting successful aging in older autistic adults. Using Fernández-Ballesteros’ four-domain model of “aging well” we review knowledge on aging and autism by examining outcomes in health and functioning, cognitive and physical functioning, positive affect and control, and social participation and engagement. Findings indicate that outcomes in autistic older adults are generally poor, marked by increased medical conditions, low adaptive skills, elevated risk of cognitive decline, limited physical activity, high rates of mental health conditions, low quality of life, and reduced social or community participation. Patterns of challenges are similar across cognitive abilities and profiles of autistic traits. Challenges and next steps in aging and autism research are identified, and future directions for the field are discussed.

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Section: Discussionmentioning

confidence: 99%

Aging Well and Autism: A Narrative Review and Recommendations for Future Research

Klein,

Klinger

2024

Healthcare

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“…Prior research indicates using two physician visit codes for autism (Burke et al, 2014) and/or one from another source (e.g. hospitalization) has good specificity and moderate sensitivity when examining the validity of administrative health data relative to gold standard autism assessment methods (Dodds et al, 2009) and has been used in past research (Lunsky, Lai, et al, 2022; Weiss et al, 2018). Those not identified as autistic within the primary cohort were placed in the “other DD” group.…”

Section: Methodsmentioning

confidence: 99%

“…The majority of these studies, however, are comprised predominantly of young adult males (Cawthorpe, 2017; Chiang et al, 2015; Davignon et al, 2018; Kohane et al, 2012; Tyler et al, 2011; Weiss et al, 2018) and many do not include sex-stratified analyses to allow for an understanding of autistic women’s patterns of need. This is particularly concerning as autistic adults are at higher risk of premature mortality than non-autistic adults (Lunsky, Lai, et al, 2022), with some evidence of increased risk for autistic women compared to men (Akobirshoev et al, 2020). To improve health outcomes and inform appropriate service provision across adulthood, we need a more comprehensive understanding of the health needs and service use patterns of autistic women and men at the population level.…”

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confidence: 99%

Health conditions and service use of autistic women and men: A retrospective population-based case–control study

Tint

Chung²,

Lai

et al. 2023

Autism

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This study used administrative data to compare the socio-demographics, health conditions, and health service use of autistic adults with adults with and without other developmental disabilities, after matching for age and sex. Autistic women and men were more likely to have a wide range of physical and mental health conditions compared to adults without developmental disabilities. Rates of co-occurring health conditions were similar or lower among autistic adults compared to adults with other developmental disabilities, except for a higher prevalence of psychiatric conditions among autistic adults. Notably increased psychiatric service use was evident among autistic women and men compared to the other groups. Among age-matched autistic women and men, significant differences were found for physical (i.e. Crohn’s disease/colitis, rheumatoid arthritis) and psychiatric conditions (i.e. psychotic disorders, non-psychotic disorders), as well as service use (i.e. emergency department visits, hospitalizations, family doctor and neurologist visits). These findings suggest autistic adults have high health care needs, as do adults with other developmental disabilities. Mental health support is especially critical for autistic adults and research examining sex and gender effects will assist in tailoring health promotion and intervention efforts. Lay abstract This study used administrative data from Ontario, Canada to compare the health conditions and service use of autistic women and men with adults with other developmental disabilities and with adults without developmental disabilities. Autistic women and men were more likely to have physical and mental health conditions compared to adults without developmental disabilities. Rates of health conditions were similar or lower among autistic adults compared to adults with other developmental disabilities, except more autistic adults had psychiatric conditions. Autistic women and men used higher rates of psychiatric services compared to all other groups. When comparing autistic women with same aged autistic men, sex differences were found for specific physical (Crohn’s disease/colitis, rheumatoid arthritis) and psychiatric conditions (psychotic disorders, non-psychotic disorders), as well differences in service use (emergency department visits, hospitalizations, family doctor and neurologist visits). These results further highlight the high health needs and service use of autistic women and men, as well as adults with other developmental disabilities. It is critical for future research to focus on mental health support for autistic adults and to better understand how to tailor supports to best serve autistic women.

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“…Autistic individuals have increased risks of co-occurring physical and mental health conditions, and have significantly increased risk of mortality and reduction in life expectancy. This may be partly attributable to deaths from neurological causes (including epilepsy/seizures), cancers, and suicide, although these do not fully account for this concerning disparity in lifespan [ 2 – 8 ].…”

Section: Introductionmentioning

confidence: 99%

Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults

Ward,

Weir,

Allison

et al. 2023

Molecular Autism

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Background The poorer physical health of autistic adults compared to non-autistic adults has been highlighted by several epidemiological studies. However, research has so far been limited to specific geographical areas and has primarily focused on young autistic individuals (aged 35 years and younger). Recent studies indicate a higher rate of mortality in autistic people, as well as poorer quality of self-reported healthcare interactions. This study aims to determine, first, whether autistic people experience greater levels of non-communicable health conditions and second, whether these are explained by differences in demographics (i.e. sex, country of residence, ethnicity, education level), alcohol use, smoking, body mass index (BMI), or family history of medical conditions. Method We employed a cross-sectional, convenience-sampling study via an anonymous, online survey of autistic and non-autistic adults (n = 2305, mean age = 41.6, 65.9% female, 49% autistic). The survey asked participants to self-report information about their demographics, autism diagnosis, diet, exercise, sleep, sexual health, substance use, personal medical history, and family medical history (for all first-degree, biological relatives). Binomial logistic regression across four iterative models of increasing complexity was applied to assess rates of physical health conditions. The Benjamini–Hochberg correction was used to account for multiple testing, and only physical health conditions that achieved at least 1% endorsement within the overall sample (n > 22) were included in the analysis to reduce risk of Type I errors. We also used novel network analysis methods to test whether there are increased levels of multimorbidity between autistic and non-autistic people. Results There were significantly elevated rates of non-communicable conditions across all organ systems in autistic people, including gastrointestinal, neurological, endocrine, visual, ear/nose/throat, skin, liver and kidney, and haematological conditions. We confirmed previous findings by showing highly significant differences in rates of neurological and gastrointestinal symptoms (p < 0.0001). In addition, we established in the largest sample to date that Ehler-Danlos Syndrome (EDS) was more likely to occur among autistic females compared to non-autistic females. Finally, we found a higher prevalence of Coeliac’s disease among autistic individuals compared to non-autistic individuals after controlling for sex, ethnicity, country of residence, alcohol use, smoking, and BMI, but these results became non-significant after accounting for family history. Limitations Our study is biased towards females, white individuals, highly educated people, and UK residents, likely due to sampling biases. Our self-report study design may also exclude those who lack access to computers, or those with intellectual disability. Our network analysis is also limited in size. Conclusions This study provides evidence of widespread, physical health comorbidity that spans nearly all major organ systems in autistic adults compared to non-autistic adults, using both binary logistic regression and network models. Healthcare professionals must be made aware of the range of co-occurring physical health conditions that may be more common among autistic people. However, our findings also point towards potential avenues requiring further exploration, such as the association of autism with both Coeliac’s disease and EDS.

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Premature mortality in a population‐based cohort of autistic adults in Canada

Cited by 13 publications

References 47 publications

Aging Well and Autism: A Narrative Review and Recommendations for Future Research

Aging Well and Autism: A Narrative Review and Recommendations for Future Research

Health conditions and service use of autistic women and men: A retrospective population-based case–control study

Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults

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