Community Participation for Adults with ASD | Organization for Autism Research

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In this one-year study, “Examining Personal and Environmental Factors Associated with Community Participation for Adults with ASD,” investigators Dara Chan, Sc.D., an assistant professor in the Division of Clinical Rehabilitation and Mental Health Counseling at the University of North Carolina at Chapel Hill, and Mark R. Klinger, Ph.D., director of research at the TEACCH Autism Program and an associate professor in the same division, looked at the community activities of adults with autism spectrum disorder (ASD) to explore the role of communication skills, living situation (independent, with family, group home), and employment status on community participation.

Specifically, the researchers used Global Positioning Systems (GPS) to learn more about how adults were actually participating in the community, including where and how they spent their time, and how far they traveled to different types of locations. They also heard directly from the adults with ASD about the importance of these different locations and whether they felt part of their community.

Twenty-three adults with ASD living in various communities across North Carolina completed the study:

 The majority of participants in the current study were male (78%) and ranged in age from 21 to 50 years old. About half of the adults in the study lived with family, and 25% lived in a group home. The remaining participants lived with roommates and one lived independently. Over half were employed, either part time (57%) or full time (4%). About half the adults also had a diagnosis of an intellectual disability (47.8%), and about half had “good” conversation ability (52.2%), rated on their ability to communicate by any means and carry on a conversation.

They were invited to participate if they had already completed surveys from another research project, the TEACCH Longitudinal Outcome Study, so that the researchers could combine the survey data with the results of the GPS data. The survey data contained information about the person’s age, communication skills, daily living skills, living situation, and employment status. That data enabled the research team to better understand if any of these factors made a difference in how much individuals were participating in the community.

Participants carried GPS trackers with them for seven days and also completed a travel diary for each day they were in the study, recording more information about what they did in the community, such as the name of where they went, why they went there and with whom, and how they got there. At the end of the seven days, the researchers did follow-up interviews with each participant to gain more information about their activities during those seven days, including about other places in the community they may not have gone to during that particular week but that were still important to them, including places that they visited frequently or were part of their typical routine.

 

Findings

Dr. Chan and Dr. Klinger found that participation in the community and activity away from home varied greatly among study participants. All of the participants, however, felt connected to their community through personal interactions with community members. These findings were found across conversation ability and employment status, suggesting even those who were not employed and had less ability to communicate were still engaging in the community in ways that were meaningful to them. Connections to individuals in the community, whether in the neighborhood or in places like the grocery store, library, or restaurants that are frequently visited helped the study participants feel like they were a part of the community.

Social and recreational locations, including activities like going to a video game or comic book store and interacting with others at places like the gym or church, were noted as important by study participants. In fact, some traveled great distances to participate in activities at these locations and access these resources. In many cases familiarity with the people at these locations and what to expect was associated with the significance of the location.

Finally, the findings suggested that individuals with good conversational ability and greater independence in navigating their community still need significant support in adulthood to participate in the community, but may be less likely to receive needed services. This possibility was based on the researchers’ finding that adults who were driving independently but unemployed averaged less than 2 hours away from home per day, and that these patterns remarkably persisted across different geographic regions, which they noted could reflect a level of functioning that prohibits qualifying for support services.

Dr. Chan was awarded a Switzer Fellowship through the National Institute on Disability, Independent Living, and Rehabilitation Research to build on the pilot data collected through the OAR study.

While researchers and service providers seek to improve the abilities of adults with ASD to perform activities of their choice in the community, the adults in the current study expressed a desire for more time and the opportunity to engage in social interactions in the community, not additional social skills training. In fact, Dr. Chan is collaborating with researchers at the University of North Carolina on a proposal for a study focused on enhancing community connections because of the desire adults in this study show for social and community engagement opportunities.

 


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