“Reasons I Interact with the Outside World”: Motivations and Barriers to Community Engagement and Social Interaction in Adults on the Autism Spectrum

Poster Presentation
Saturday, May 4, 2019: 11:30 AM-1:30 PM
Room: 710 (Palais des congres de Montreal)
T. A. M. McDonald1, Z. J. Williams2, M. Harden3, F. Ye4, R. Fan4 and B. A. Malow1, (1)Sleep Disorders Division, Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, (2)Medical Scientist Training Program, Vanderbilt University School of Medicine, Nashville, TN, (3)Department of Neurology, Sleep Disorders Division, Vanderbilt University Medical Center, Nashville, TN, (4)Department of Biostatistics, Vanderbilt University Medical Center, Nashville, TN

As children with autism age into adolescence and adulthood, their social environment becomes increasingly more complex, yet the number of programs, services, and interventions (PSIs) available to them dramatically decrease. Compared to interventions for children with autism, there are relatively few interventions targeting skill development and engagement for adults with autism. Although the literature investigating the perceptions, experiences, and values of adults with autism is growing, the current literature base is still sparse and remains a priority for research. Understanding the perspectives of adults on the autism spectrum is critical for developing meaningful PSIs for this population.


To increase the social validity of PSIs for this population, this study sought to investigate the self-reported life goals as well as the motivations and barriers to community engagement perceived by 42 adults on the autism spectrum.


Participants (ages 18 – 34 years) completed an anonymous online survey that included multiple-choice, multiple-response items and open-ended items related to demographic questions, intervention history, interests, goals, and barriers to activities or social engagement. Open-ended items included: “Please list one or two of your most important goals”, “What motivates you to engage in activities outside the home?”, and “What motivates you to engage with others?” Qualitative analysis and inter-coder agreement of survey responses by multiple authors was performed.


Participants reported a wide range of goals, with common themes of employment/vocation and education/training, but also independence, relationships, health, humanitarian causes, emotions, character, and religious/spiritual domains. Participants also identified barriers to engagement in activities or social interactions related to social difficulties and desire, emotions, transportation, employment and financial affairs, health and sensory input, and scheduling, with the majority (80%) of adults identifying more than one barrier. Over 40% of respondents were not in employment, education, or training (NEET). Inter-coder agreement was high.


While employment was regarded as a major goal, many other goals were identified by participants. A wide range of barriers were also identified. PSIs that serve adults on the autism spectrum should consider the wide range of goals and barriers to engagement identified by this population.