Community social participation can be an important quality-of-life issue for people with Autism Spectrum Disorders (ASD). Community integration—taking part in work, school and recreational activities—is challenging even when there isn’t a pandemic. A new College of Public Health study shows that COVID-19 made it especially difficult for individuals with ASD, limiting their transportation options and ability to access needed services.
“This population has far more barriers already,” says Beth Pfeiffer, associate professor of Health and Rehabilitation Sciences, who led the study. When public transit systems and agency-provided transportation options were suspended during the pandemic, “they became totally dependent on caregivers to get them anywhere. None of the participants reported any type of travel provided by a social or human services agency to ensure their essential needs were being met during this time period.”
Social interaction was curtailed across society during COVID, but the disruption of daily routines, community participation and access to services has a potentially magnified impact for people with ASD. Many rely on in-home visits or community groups that were put on hold during the pandemic, and many may be less able to adapt to online video alternatives.
Pfeiffer’s team in the college’s REACH Lab (Research, Engagement and Advocacy for Community Participation and Health) works with service agencies in and around Philadelphia to develop interventions and outcome measures aimed at promoting inclusion in community activities for those with ASD and intellectual and developmental disabilities (IDD).
At the time the pandemic broke out in March 2020, the Lab already had a study in place examining the activity of a small number of young adults (average age 23.5) with ASD. All lived with parents; most held part-time employment outside the home that they were able to travel to independently. That study had equipped participants with a phone app employing GPS to track their movement, including travel to workplaces, health services and recreational locations. They also completed daily online reports about their destinations, activities and modes of transportation.
Data had been gathered prior to COVID restrictions, in January and February of 2020, “so we could take those same participants and look at them once the pandemic started, and restrictions were put in place, to make a comparison,” Pfeiffer explains. The study measured one pre-COVID two-week period in early 2020, and two two-week periods during the lockdown. For all the participants, the number of trip destinations, as well as travel modes, were substantially reduced during a two-week period during COVID and only increased minimally in a later two-week period during COVID. All of the study participants had significant reductions in total destinations, time out of home, range of travel and distance traveled.
The study will continue with a post-COVID phase, comparing activity after social restrictions are lifted. Pfeiffer thinks the GPS-based tracking, used on a voluntary basis by participants, should continue to be a helpful instrument for measuring community mobility.
“In some ways, using GPS is a novel approach to being able to obtain information for this population,” she says. “We know that inclusion is an important factor for individuals with ASD and IDD. What barriers are impacting that? How much are they participating? We hope it’s a methodology we can use to help improve people’s ability to participate, work and integrate in the community.”