Positive Approaches Journal, Volume 12, Issue 4
Positive Approaches Journal | 7-12
Volume 12 ► Issue 4 ► February 2024
Data Discoveries
The goal of Data Discoveries is to present useful data using new methods and platforms that can be customized.
For the estimated 5.4 million autistic adults in the United States,1 middle and later adulthood can be particularly vulnerable periods, characterized by a growing evidence base indicating increased risk of early-onset dementia (including Alzheimer’s),2 Parkinson’s disease,2-5 depression,6 and epilepsy5 among autistic individuals compared to their non-autistic peers. This evidence has contributed to growing concerns about gaps in services and supports for autistic individuals and their families as they age into adulthood. Studies focused primarily on younger autistic adults suggest significantly elevated rates of co-occurring acute and chronic health and psychiatric conditions,7-9 and while these conditions likely persist throughout adulthood, there is a dearth of research on how they may present or change during this later period.6 The November 2023 Pennsylvania Autism Training Conference (PATC) featured a session on aging, dementia, and autism. This session highlighted tools for providers, to help identify changes in behavior that may indicate a need for additional follow-up, to ensure that the appropriate services and support systems are in place as autistic people age.
Some research also suggests that participation in community activities among autistic individuals declines from adolescence to adulthood,10 and there is further evidence that both autistic children and adults are less likely to be involved in community, social, recreation, and leisure activities compared to their non-autistic peers.11-13 However, there is also growing evidence that community participation preferences, including the relative and perceived importance of community activities, may differ between autistic and non-autistic individuals.14 Social isolation and loneliness in later adulthood have also been associated with increased risk for poor health outcomes, including neurodegenerative conditions like Alzheimer’s and Parkinson’s Diseases, in adults. This linkage, however, has not been explored in autistic adult populations. As we continue to learn more about the experiences of aging autistic individuals, we can develop better resources, and services and supports can be designed to align with these preferences more closely.
dashboard presented below visualizes data
from the 2018 Pennsylvania Autism
Needs Assessment (PANA) about community participation and preferences among autistic individuals
across different age groups (first tab) and caregiver long-term planning
activities and concerns (second tab). The data in the first tab show that
participation in activities, such as exercise and social activities, decreases
with age. Results also indicate that individuals have not participated in
community activities in the past thirty days as much as they would have liked.
Across all age groups, participants indicated that the activities listed were
relatively important with the importance of some activities increasing with
age. These findings underscore the importance of aligning services and supports
with the preferences of those receiving them. The second tab includes data from
caregivers of autistic individuals and captures long-term planning activities,
including concerns about making and maintaining these plans.
References
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2. Vivanti G, Tao S, Lyall K, Robins DL, Shea LL. The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder. Autism Res. Oct 2021;14(10):2189-2199. doi:10.1002/aur.2590
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