In 2015, OAR’s Board of Directors authorized funding for six new applied autism research studies in 2016. These new grants, totaling $179,827, bring OAR’s total research funding to over $3.5 million since 2002. This is a preview of one of those six studies.
Limited but emerging research on adult outcomes for individuals with autism spectrum disorders (ASD) reports less community participation, social interaction, paid employment, and independent living compared to typically developing peers and other disability groups. However, little is known about the daily activities of adults with ASD and factors that influence that participation. While pilot research is underway to examine how adults with ASD who live independently or in supervised housing are engaged in the community, there is no similar research on individuals with ASD who live with family or in group homes. Past research shows family and group settings are considered home for one-third to over half of the population.
In this study, “Examining Personal and Environmental Factors Associated with Community Participation for Adults with ASD,” investigators Dara Chan, Sc.D., and Mark R. Klinger, Ph.D., hope to uncover some answers about those activities that can help inform understanding of where and how adults with ASD who live with family or in group homes spend their time and provide a basis for recommendations for both community-based and individual interventions seeking to improve participation and integration.
The critical barriers to participation targeted in the study are skills, motivation, and resource accessibility. Examples of skills that may be particularly significant for community participation for adults with ASD are social, communication, and vocational skills, and the ability to use community transportation or navigate the community area.
Dr. Chan is an assistant professor in the Division of Clinical Rehabilitation and Mental Health Counseling at the University of North Carolina at Chapel Hill. Dr. Klinger is the director of research at the TEACCH Autism Program and an associate professor in the same division.
The study will employ GPS and Geographic Information System (GIS) measures to describe real-time community integration activities of adults with ASD living with family or in a group home. All participants in this study are already enrolled in a larger longitudinal study, “Adults with Autism 40 Year Longitudinal Study,” currently being conducted by Dr. Klinger and Laura Klinger, Ph.D., to investigate community integration. The larger study has collected data from 250 adults (21 years of age or older) with ASD related to function, service use, and quality of living. That study is ongoing, with data currently collected for more than 250 adults with ASD diagnosed as children at TEACCH between 1967 and 1999.
Data from a total of 400 individuals living with family or in group homes will be collected for the OAR-funded project. Fifty participants will use GPS trackers to capture time away from home, distance traveled, and locations visited for seven days. GIS technology will integrate GPS travel data to create maps of activity locations and assess environmental accessibility related to service use and participation. GIS creates a composite map of all daily GPS activity locations visited, or “activity space.”
While there is emerging literature using GIS and GPS to examine community integration in disability populations, there are no published studies using GIS or GPS to examine community integration in individuals with ASD.
Follow-up qualitative interviews with approximately 80 of the 400 participants will be conducted to assess the importance of community activities and barriers to integration.
These results will be combined with adult outcome survey data from the larger study to examine the role of personal factors such as motivation and skill level in a variety of areas (for example, communication, vocational, social, and daily living skills) on community participation.
The researchers anticipate that the data they collect will identify the degree to which adults with ASD who live with their families or in group homes are integrated into their communities and help identify facilitators and barriers to participation within those communities at the environmental and personal level. With this information, they can evaluate differences in participation for these groups compared to those living independently.
Having that information can enable service providers to develop interventions that improve activity, participation, and quality of living for adults with ASD. The results of the study can also help service providers and others to better promote service use and community participation to adults with ASD and their families. For example, if distance to activities emerges as a barrier, service providers may be able to use that information to either provide transportation or set up activities in locations more easily accessible to the adults with ASD in their communities.
GPS data may also point to significant factors to include in providing educational support to families and designing interventions. For example, if the amount of time spent away from home is significantly associated with greater community integration and sense of belonging, future interventions can target getting individuals with ASD into the community more as an outcome.
Results of the current project will also provide clear implications for public policies and resources needed for interventions. By investigating reasons why adults with ASD who live with family or in group homes may have difficulties with community integration, public policies can be changed to better target those areas, including community integration, that may be strongly linked to successful outcomes.
This project is a pilot study that will provide preliminary data and test the feasibility of implementing a larger scale study using these measures with a larger sample size.
Understanding what factors predict better community integration is a vital first step to understanding the role of successful integration into communities for individuals with ASD and can help lead to interventions that target improved connections to the community.
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