Self-reported community participation experiences and preferences of autistic adults

Abstract

Community participation is essential to overall health and well-being. However, research on the community participation experiences and preferences of autistic adults is lacking. Results from a large, mid-Atlantic statewide needs assessment survey found that a number of activities that include social interactions or are focused on meeting daily needs are important to autistic adults and that they participate in these activities to varying degrees. Going shopping at a grocery store was the most common community activity reported and also rated as important by the largest proportion of respondents. Autistic adults with a co-occurring intellectual disability participated in fewer activities and reported fewer activities as important. Sufficiency, the extent to which each individual was satisfied with their level of participation in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth, or the number of important activities participated in during the past month, was lowest for autistic adults living in facilities and those with co-occurring psychiatric diagnoses, and higher for adults with self-reported service needs. As new community participation requirements for Medicaid roll out across the United States, autistic adults can provide critical feedback to inform policy and practice. Lay abstract Although participation in communities is a key component of health and well-being, little research has explored community participation among autistic adults. A better understanding of preferences and access to various community activities among autistic adults provides intervention and policy directions in a critical area. This study reports responses from one of the largest groups of autistic adults surveyed to date. Participants reported their valued activities, number of days they participated in each activity during the previous month, and the extent to which they perceived their participation to be sufficient. Grocery shopping was the most common community activity, and most important. A wide range of activities were participated in during the previous month and more than half of the autistic adults reported that most activities were important. Autistic adults with a co-occurring intellectual disability participated in fewer activities and said that fewer activities were important. Sufficiency, or the degree to which an individual felt they participated enough in important activities, was greater for autistic adults with higher incomes and lower for autistic adults who lived independently or had co-occurring psychiatric diagnoses. Breadth of participation, or the number of important types of participation in the past month, was lower for autistic adults residing in supported living facilities and for autistic adults with co-occurring psychiatric diagnoses. Breadth was greater for autistic adults with self-reported service needs. Our study findings offer important information to guide implementation of new federal requirements aimed at promoting greater community participation among individuals covered by Medicaid.