Using GPS and Self-Report Data to Examine the Relationship Between Community Mobility and Community Participation Among Autistic Young Adults.

IMPORTANCE: Community participation of autistic adults is important for health and well-being. Many clinical efforts and interventions aim to enhance community participation in this population. OBJECTIVE: To empirically examine the relationship between community participation and community mobility. DESIGN: A randomized controlled trial using data from baseline and 4- to 6-wk follow-up. SETTING: Community organizations serving autistic adults in Philadelphia. PARTICIPANTS: Sixty-three autistic young adults with data on community mobility and participation from a prior study on public transportation use. OUTCOMES AND MEASURES: Participants were tracked with GPS-enabled cell phones over a 2-wk period. A spatiotemporal data mining algorithm was used to compute the total number of destinations, nonhome destinations, unique destinations, percentage of time spent outside the home, and median daily activity space area from the GPS data. The Temple University Community Participation measure was used to collect self-report data in 21 different areas, and total amount, breadth, and sufficiency of participation were calculated. RESULTS: Moderate and statistically significant associations were found between community mobility and participation variables at baseline and follow-up. However, changes in community mobility were not related to changes in community participation. CONCLUSION: Health policymakers and providers should consider community mobility as a factor that can affect community participation in autistic individuals. Plain-Language Summary: Lower levels of community participation among autistic young adults affect health outcomes and overall quality of life. Community mobility is often a barrier to community participation. An understanding of the relationship between community mobility and community participation can lead to occupational therapists tailoring specific interventions and policies that support autistic young adults to engage in important life activities within the community.

Caregiver perspectives on barriers and facilitators to primary care for autistic adults: A qualitative study.

Background: Primary care is associated with greater access to healthcare services and improved health outcomes. However, autistic adults report challenges accessing and utilizing primary care, in addition to unmet healthcare needs. The need to minimize existing barriers and identify strategies to facilitate successful healthcare encounters is increasingly important as autistic adults represent a growing segment of society. Minimal research has examined primary healthcare encounters for this population. Methods: As part of a larger convergent parallel design mixed-methods study that recruited autistic adults, caregivers of autistic adults, and primary care providers treating autistic adults, interviews were conducted with 31 caregivers of autistic adults. Caregivers were predominantly female (94%), and the autistic adult they cared for were primarily male (87%), with a mean age of 24 years. Thematic analysis was employed to elucidate the barriers to care, suggestions to mitigate challenges, and/or successful strategies implemented during care encounters for autistic adults, as reported by their caregivers. Results: Reported here are the results only from the caregiver interviews, in which seven themes emerged: (1) finding a primary care provider; (2) patient-provider communication; (3) anxiety due to unpredictability, an overstimulating sensory environment, and waiting time; (4) participation of consumers in the healthcare process; (5) stigma and assumptions about autism; (6) caregiver experiences; and (7) the impact of culture and ethnicity on care. Conclusion: Findings from this study have the potential to inform the development of, or improve existing, client-centered interventions to improve primary healthcare services for autistic adults.