Establishing Correlates of Successful Living Arrangements Among Adults with Autism

Background: A common benchmark during the transition from adolescence into adulthood is to move out of a parent or family home and into independent living, with or without roommates. Previous research has found that equal proportions (42%) of adults with ASD expect to reside and not to reside with their parents as they transition into adulthood.¹ Research summarizing the variability in reported rates of independent or semi-independent living stresses the wide range of the proportion of adults with ASD living independently and that those fluctuations are highly dependent on ASD presentation (e.g., with or without ID).² The majority of this previous research has relied on relatively small sample sizes and generally included only adults with ASD who are described as ‘high functioning.’ Additional research remains needed across larger and widely varying ASD populations to establish estimates of adults with ASD across living arrangements and describe their characteristics.

Objectives: The objectives of this study are to describe rates of living arrangements across a large, statewide sample of adults with ASD, and to determine correlates of living arrangement satisfaction reported by adults with ASD.

Methods: The Pennsylvania Autism Needs Assessment, completed in 2018, is a statewide survey of adults with ASD over the age of 18 completing the survey for themselves and an accompanying survey of caregivers of individuals with ASD of any age. More than 1,100 adults with ASD completed the Pennsylvania Autism Needs Assessment and the majority of these individuals consented to have their survey responses linked to their Medicaid claims data. The type of living arrangement as well as satisfaction with the living arrangement was reported by adults with ASD. Additional analyses will merge demographic and clinical data, as well as other characteristics of adults with ASD to report on living arrangements among adults with ASD.

Results: Most (72.0%) adults with ASD who completed the survey for themselves reported living with their parents, relatives, or in a family home. The next most common living arrangements were living independently with support (7.0%), living independently without support (5.7%), and living with a roommate or spouse (5.5%). The majority (82.3%) of adults with ASD reported they were happy or very happy with their current living arrangement, but almost one in five (17.7%) adults with ASD reported they were unhappy or very unhappy with their living arrangement. Additional results focused on differences in living arrangement and satisfaction by living arrangement will be stratified by age, symptom presentation, geographic location, and other factors will be produced using logistic regression.

Conclusions: Most adults with ASD who responded to the PA Autism Needs Assessment were living at home, as has been reported in previous research. Most adults with ASD were also satisfied with their living arrangement, although this dimension of independent living has been relatively unexplored in precious research. Additional analyses to describe and understand living arrangement preferences, successes, and challenges among adults with ASD will be conducted and produced.