Community Participation Experiences and Preferences Among Adults with Autism

Background:

As the prevalence of autism spectrum disorder (ASD) has increased, growing numbers of adolescents with ASD are aging into adulthood. Advocacy organizations and new policy directives at the federal level have called for increased attention to successful community integration of adults with ASD.^1,2 Research on neurotypical populations has suggested that active and meaningful integration in one’s community is beneficial, including decreased social isolation,^3-5 increased wellbeing,^6,7 improved quality of life,^8,9 improved feelings of depression and anxiety, and improved self-rated health.¹⁰ Limited research on community participation among individuals with ASD has primarily focused on children. Compared to their neurotypical peers, children with ASD participate at lower rates in recreation, leisure, social, and community-based activities and events.^11-13 One study of young adults found that community participation among individuals with ASD was significantly lower than that of their neurotypical peers.¹⁴ It remains unclear whether benefits from community integration for adults with ASD would be similar, whether current participation levels align with individual preferences and community characteristics, and whether additional supports, policies, and programs are needed to facilitate community integration.

Objectives:

• Characterize levels of community participation and satisfaction with participation
• Examine differences in community participation by race, income level, urban vs. rural residence, and level of service support.

Methods:

We examine data from a statewide survey of individuals with ASD in Pennsylvania (PA) conducted by the ASERT Collaborative and commissioned by the PA Bureau of Autism Services. The survey collected information on demographic characteristics, service needs, and community integration, among other topics, in 2017. Community integration was measured by the Temple University Community Participation measure (TUCP), a standardized measure examining community participation and allowing adult respondents to report on frequency of participation in a range of activities and the value they place on those activities.

Results:

The average age of adult respondents (n=1,302) was 28 (range 18-98); 29% were female, 83% were White, 21% lived in urban areas, and 72% lived with a family member. Less than half (44%) reported participation in social activities with friends, and fewer than one in three (30%) participated in groups, clubs, or organizations. About one quarter (26%) participated in volunteer work. Of these activities, the most time was spent on social activities with friends (average 5.3 hours per week).

Most respondents felt they “did not participate enough” in advocacy groups (69%), social groups (70%), civic or political activities (70%), and library activities (58%). However, participation in these activities was “important” for many: social groups were important for 43%, library activities for 38%, advocacy groups for 25%, and civic/political activities for 19%.

Conclusions:

Most adults with autism surveyed said they did not participate enough in a range of community activities. However, for a substantial portion, these activities were viewed as important. Strategies to assess and meet individual preferences for community integration, both in frequency and scope, are needed. These could include enhanced home and community-based service supports, additional service coordination, expansive dissemination of integration opportunities, and ongoing evaluation of satisfaction with current levels of community integration.