ABSTRACT
Background: Sensory processing differences have been shown to impact involvement in community activities. However, relatively little is known about how these differences affect community participation in autistic adults. Objective: The objective of this study was to explore how sensory processing patterns of autistic adults impact community participation, including where people go, what they do, the amount of time in the community, and preferred locations. Methods: We used data gathered from six autistic adults and their caregivers who participated in two studies. From Study 1, we reviewed results of the Adolescent and Adult Sensory Profile (AASP) and transcripts from interviews with caregivers. From Study 2, we reviewed GPS tracking data and transcripts from structured interviews with autistic adults focused on community participation. We read transcript data, identified quotes related to sensory processing and community participation and constructed individual participant narratives which linked findings from interviews, AASP, and GPS tracking. Results: Participants included three males and three females ranging in age from 29 to 51. Each participant had a unique sensory processing profile that influenced where they went, the activities in which they engaged, how much time they spent in the community, and their preferred locations. Those whose sensory processing patterns indicated sensory sensitivity and sensory avoiding described the experience of certain environments as overwhelming and fatiguing and thus spent less time in the community and visited fewer places than those with other sensory processing patterns. Conclusion: Results highlight the importance of sensory processing, especially as it impacts participation in the community. Sensory processing patterns should be considered along with other personal and contextual factors when assessing community participation and personal sensory processing patterns should be matched with activities and environmental demands.
ABSTRACT
LAY ABSTRACT: Self-report measures are frequently used for research and clinical assessments of adults with autism spectrum disorder. However, there has been little research examining agreement between self-report and informant-report in this population. Valid self-report measures are essential for conducting research with and providing high quality clinical services for adults with autism spectrum disorder. This study collected measures from 40 pairs of adults with autism spectrum disorder and their caregivers on measures of symptom severity, daily living skills, quality of life, and unmet service needs. Caregiver and self-report responses were highly associated with one another on all measures, though there were significant gaps between scores on the measures of daily living skills and quality of life. It is also important to understand how each informant's responses relate to outcomes in the areas of employment and independent living. Using self-report and caregiver-report together better predicted outcomes for the adult with autism spectrum disorder than scores from either individual reporter alone. These findings show that there is unique and valuable information provided by both adults with autism spectrum disorder and their caregivers; a multi-informant approach is important for obtaining the most comprehensive picture of current functioning, identifying unmet service needs, and creating treatment plans. This research also highlights the importance of including and prioritizing self-report perspectives in shaping service planning.
