Abstract
BackgroundOriginally described as a disorder of childhood, evidence now demonstrates the lifelong nature of autism spectrum disorder (ASD). Despite the increase of the population over age 65, older adults with ASD remain a scarcely explored subpopulation. This study set out to investigate the prevalence of clinically relevant behaviors and medical problems in a sample of US adults aged 30 to 59 with ASD and intellectual disability (ID), in comparison to those with ID only.MethodsA cross-sectional study, with both an exploratory and replication analysis, was conducted using National Core Indicators (NCI) multi-state surveys from 2009 to 2010 and 2010 to 2011. There were 4,989 and 4,261 adults aged 30–59 with ID examined from the 2009 to 2010 and 2010 to 2011 samples, respectively. The two consecutive annual samples consisted of 438 (9%) and 298 (7%) individuals with ASD and ID. Variables were chosen from the NCI data as outcomes, including medication use for behavior problems, severe or aggressive behavior problems and selected medical conditions.ResultsNo age-associated disparities were observed between adults with ASD and ID versus adults with ID only in either sample. For the 2009 to 2010 sample, the prevalence of support needed to manage self-injurious, disruptive and destructive behavior in subjects with ASD and ID ranged from 40 to 60%. Similarly, the prevalence estimates of self-injurious, disruptive and destructive behavior were each almost double in adults with ASD and ID relative to those with ID only. These results were replicated in the 2010 to 2011 sample.ConclusionsThe findings of this study highlight the urgent need for research on the nature and treatment of severe behavior problems in the rapidly increasing population of older adults with ASD. They also suggest the importance of developing policies that expand our capacity to care for these individuals.
Highlights
Described as a disorder of childhood, evidence demonstrates the lifelong nature of autism spectrum disorder (ASD)
Gaining knowledge of lifetime trajectories of ASD is likely to provide important clues to teasing apart the clinical and etiologic heterogeneity of this condition. This knowledge will provide needed information on the trajectories of care from family to institutional care patterns and needs as ASD patients move through their lifecycle
While increasing severity of intellectual disability (ID) was significantly associated with medication for behavior problems, self-injury behavior and seizure disorder or neurological problem within both diagnostic groups for the exploratory sample, these associations were not significant in the ASD group for the replication sample. This large-scale, systematic study was designed to examine clinical problems specific to older adults with ASD and ID. Adults with both ASD and ID constitute those individuals with ASD likely to have the greatest degree of behavioral and associated medical problems [19], and are likely to provide insights into those affected adults requiring the greatest levels of care
Summary
Described as a disorder of childhood, evidence demonstrates the lifelong nature of autism spectrum disorder (ASD). Estimated per capita lifetime direct and indirect costs of ASD in the US are over $3 million and do not include expenses related to individuals with ASD living into their 60s and older [7]. The need to look beyond younger affected populations in efforts to mitigate the burdens of ASD is highlighted by recent analyses noting that the largest contributor to the estimated per capita lifetime direct cost of ASD is care during adulthood [7]. Gaining knowledge of lifetime trajectories of ASD is likely to provide important clues to teasing apart the clinical and etiologic heterogeneity of this condition This knowledge will provide needed information on the trajectories of care from family to institutional care patterns and needs as ASD patients move through their lifecycle
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