Mortality and Factors Associated with Death in Autism Spectrum Disorders - a Review

Abstract

The purpose of this review is to provide information on mortality and factors associated with death in people with autism spectrum disorder (ASD). A review of the published systematic mortality studies suggest that the observed number of deaths is nearly three times higher in populations with ASD than in the general population. Research into risk factors associated with survival in people with ASD is limited, and no studies have controlled for changes in these factors over time. The most important risk factors that are associated with reduced life expectancy in people with ASD are moderate to profound intellectual disability, having epilepsy, and female gender. This supports the need for continuous and coordinated care for this high-risk sub population of individuals within the population of people with ASD. It is concluded that measures to reduce inequalities in people with ASD need to focus on reducing mortality from potentially preventable causes of death such as infectious diseases and accidents.

Mortality and cause of death of Australians on the autism spectrum

“…The present study found no support for an association between mortality risk and sociodemographic factors of remoteness and socioeconomic status. Female gender has often been associated with higher mortality rates for those on the autism spectrum (Mouridsen, ; Woolfenden et al, ). Similarly, the univariate results indicate a significant association between being female and heightened mortality risk.…”

“…Female gender, comorbid epilepsy, and the presence and degree of ID have been associated with higher mortality rates in those on the autism spectrum (Gillberg, Billstedt, Sundh, & Gillberg, ; Hirvikoski et al, ; Mouridsen, Bronnum‐Hansen, Rich, & Isager, ; Shavelle, Strauss, & Pickett, ). Studies also suggest that mortality for those on the spectrum is associated with concurrent ID and its related medical comorbidities, such as cardiovascular disease and other mental/behavioral disorders, rather than an outcome of autism spectrum disorder (ASD) itself (Bilder et al, ; Mouridsen, ; Schendel et al, ). Alternatively, co‐occurrence between ASD and other factors such as social or financial disadvantage (Henninger & Taylor, ; Howlin, ), poor access to or insufficient health services (Nicolaidis et al, ), inadequate or under‐skilled health workforce (Zerbo, Massolo, Qian, & Croen, ), and polypharmacy (Lake, Balogh, & Lunsky, ) may contribute to excess mortality.…”

Cancer Care of Children, Adolescents and Adults With Autism Spectrum Disorders: Key Information and Strategies for Oncology Teams

“…As a possible consequence of underutilization of healthcare resources leading to unmet needs, an increased overall mortality has been observed in the ASD population (39)(40)(41). This is associated with complications related to different comorbidities including suicide, accidental death resulting from unsafe behaviors, use of supplemental medications such as atypical antipsychotics, poor nutrition, and insufficient/inappropriate use of healthcare resources (42)(43)(44)(45). Specifically, the odds ratio of death from a neoplasm was estimated to be close to double in individuals with ASD (1.83 in females, 1.79 in males) when compared than non-ASD controls (41).…”

Elopement

“…High profile incidents including drownings and traffic accidents prompted calls for more research focused on understanding and preventing elopement (The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration; McIlwain and Fournier 2012). In parallel, research on the causes of elevated mortality among individuals with ASD (Gillberg et al 2010;Guan and Li 2017;Mouridsen 2013;Schendel et al 2016), including one study documenting a 40-fold increased risk of drowning for these individuals, (Guan and Li 2017), pointed toward elopement as a potentially important modifiable risk factor for individuals with ASD.…”