Living arrangements and satisfaction of current arrangement among autistic adults reported by autistic individuals or their caregivers.

BACKGROUND: Living arrangements is an essential component of the social environments for autistic adults. The need to understanding the status and experience of living arrangements has been highlighted. AIM: This study examined living arrangements and satisfaction with current arrangements of autistic adults reported by autistic adults or caregivers of autistic adults. METHODS: This study used data from a statewide survey of autistic adults or caregivers. RESULTS: Older autistic adults and those employed and had higher financial resources were more likely to live alone or with a roommate or spouse than to live with family or in a supervised setting. Correlates of greater satisfaction included being young, either men or women (vs. non-binary adults), public insurance, fewer service needs, no or one mental health diagnosis (vs. two or more), no psychiatric emergency room or hospitalisation history, and living with a roommate or spouse (vs. living with family). CONCLUSION: This cross-sectional study adds to the literature on the status of living arrangements and satisfaction with living arrangements among autistic adults. Future research is needed to investigate contributing factors to the satisfaction of living arrangements and quality of life among autistic adults.

Lifespan service receipt and unmet needs among individuals on the autism spectrum.

Timely data on service use and needs across the lifespan are essential to developing an effective and efficient service delivery system that is responsive to developmental issues. This study uses data from one of the largest statewide surveys conducted between 2017 and 2018 to compare service use and unmet needs among individuals on the autism spectrum across the lifespan. A statewide sample of 5792 caregivers of autistic children and adults were included in the study. Logistic regressions were conducted to compare service use and need among six age groups ranging from early childhood (0-5 years) to later adulthood (31+) while adjusting for sociodemographic characteristics. We found that the transition-age adult group (18-21 years) was less likely to receive services, including speech/language therapy, occupational therapy, one-on-one support, and social skill training, than adolescents. However, case management and mental health services increased with age. Young adults (22-30 years) were more likely to report unmet needs than both adolescents and transition-age adult groups. The use of services overall decrease and service needs increased compared to results from an earlier statewide survey that was conducting in 2009-2010. These results can be used to inform developmentally appropriate autism-related healthcare policies and service development and delivery. This study offers a more detailed look at differences between adult age subgroups that are novel. Further research is needed about the prevalence of ASD in adulthood, clinical trajectories, and outcomes in order to support autistic adults in getting the appropriate services and supports.

Community Participation Comparison Between Adults on the Autism Spectrum and Adults in the General Population.

Little research has examined the full-range of participation among adults on the autism spectrum. The current study addresses this knowledge gap by comparing the frequency, importance, breadth, and sufficiency of participation between autistic adults and adults in the general population. Autistic adults participated less, had fewer areas that were important to them, participated in fewer areas that were important to them, and were less satisfied with their participation even after controlling for demographic characteristics. Moreover, this study raises questions about what influences their perceptions about the breadth of activities that are important to them and the degree to which they desire to participate in those areas. Suggestions for future interventions and research are offered.

Living arrangements and community participation among autistic adults: Exploring the possible influences of living alone or with others.

BACKGROUND: With the increasing prevalence of autistic individuals, it is greatly needed to examine the factors impacting their community participation experiences. Where autistic adults live and how that may be related to their participation and quality of life is one environmental factor that has received little attention. AIMS: This study explored the association between living arrangements in the community and community participation for autistic adults. METHOD: This study used data from a statewide survey of autistic adults (N = 744) to investigate the relationship between living arrangements (live alone with or without support, live with roommate/spouse, or live with family) and the amount, breadth, and sufficiency of community participation. RESULTS: After controlling for sociodemographic and clinical factors known to be associated with community participation, autistic adults living with family members participated less frequently in community activities over 30 days than those living with a roommate/spouse. However, they experienced similar levels of sufficiency with their participation. Autistic adults living alone with support reported the lowest levels of sufficiency with their participation, although the amount and breadth of their participation were no different from other adults. CONCLUSION: These findings have several implications for providing support to enable autistic adults to participate in the areas that are important to them and to the extent they desire. Future research is needed to gain a better understanding of how interests and expectations for participation may be influenced by living situations.

Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services.

Autistic adults in need of long-term services and supports spend months on waiting lists before receiving such services through Medicaid. Data from a state-wide survey of adults and their caregivers on a waiting list for autism waivers suggest that the majority have unmet needs for functional skills services (63.6%), employment or vocation services (62.1%), and mental and behavioral health services (52.8%). Almost a third require case management services (28.3%). Predictors of greater service need are African American race and the number of physical and behavioral health diagnoses. Predictors of greater service receipt were employment status, housing type, and school enrollment; there was lower service receipt for African American race, Hispanic ethnicity, over age 21 years, and college completion.

Self-reported community participation experiences and preferences of autistic adults.

LAY ABSTRACT: Although participation in communities is a key component of health and well-being, little research has explored community participation among autistic adults. A better understanding of preferences and access to various community activities among autistic adults provides intervention and policy directions in a critical area. This study reports responses from one of the largest groups of autistic adults surveyed to date. Participants reported their valued activities, number of days they participated in each activity during the previous month, and the extent to which they perceived their participation to be sufficient. Grocery shopping was the most common community activity, and most important. A wide range of activities were participated in during the previous month and more than half of the autistic adults reported that most activities were important. Autistic adults with a co-occurring intellectual disability participated in fewer activities and said that fewer activities were important. Sufficiency, or the degree to which an individual felt they participated enough in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth of participation, or the number of important types of participation in the past month, was lower for autistic adults residing in supported living facilities and for autistic adults with co-occurring psychiatric diagnoses. Breadth was greater for autistic adults with self-reported service needs. Our study findings offer important information to guide implementation of new federal requirements aimed at promoting greater community participation among individuals covered by Medicaid.

Program experiences of adults with autism, their families, and providers: Findings from a focus group study.

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.

Service Needs Across the Lifespan for Individuals with Autism.

The goal of this research was to examine reported service needs among individuals with autism spectrum disorder (ASD) of all ages. Data were generated from a state survey that queried the needs of children, adolescents and adults with ASD. Logistic regression was used to compare service use and need among these age groups. Adults with ASD were less likely to be receiving multiple types of services, and more likely to have a need for services. These findings demonstrate that adults with ASD have more and different needs for services. These results can inform policy and program planning to put in place the services adults with ASD need.

"I'm supposed to be in charge": self-advocates' perspectives on their self-determination support needs.

In this qualitative interview study, we explored the perceptions of adults with intellectual disability regarding interpersonal or social supports needed to express their own self-determination. Specifically, 10 adults, all members of a self-advocacy group, were asked to discuss their understanding of the term self-determination and ways in which support staff have either supported or inhibited their self-determination. Ten themes characterizing supportive and impeding staff actions were identified. The need for greater exploration of environmental and social influences on self-determination is emphasized.