Using Telehealth to Create a Virtual Community for Adults with Autism

During March 2020, many community-based programs for adults with Autism Spectrum Disorder (ASD) needed to make the difficult decision to suspend in-person services for the safety of all stakeholders. The unexpected interruption in daily operations led to an immediate concern for the overall quality of life for participants, since so much of their daily routine and social interactions depend on services. Families were also abruptly left with limited support while trying to cope with their own anxiety and stressors surrounding COVID-19.

Devereux Summer 2020 Article

Typical programming for adults with Autism consists of reducing challenging behavior and teaching adaptive skills (e.g., social communication, functional living skills) in natural settings. Teaching procedures and strategies should be rooted in Applied Behavior Analysis (ABA), which remain the only evidence-based interventions for adults with ASD (National Autism Center, 2015). Although symptom severity often decreases over time, social skill deficits tend to persist (Schall & McDonough, 2010) and are related to difficulties forming friendships, increased loneliness, anxiety, depression, decreased life satisfaction, and lower self-esteem (Mazurek, 2014). Therefore, programming should include targeting skills in community-based settings to support individuals in developing meaningful relationships and natural supports.

Immediately after the disruption of services and in order to ensure continuity of care, providers looked to transition to remote services. Programs had to quickly answer one question, “How do you make a community-based program virtual while continuing to deliver evidence-based practices?” The following information will discuss the research surrounding the use of telehealth for adults with ASD and review one program’s response to a major public health crisis.

Telehealth

Met with uncertainty, many practitioners turned to existing research regarding telehealth to inform treatment decisions. Telehealth broadly refers to “the use of communication technology to assist in education and treatment of health-related conditions” (Ferguson et al., 2019, p. 583) and is associated with many benefits including increased access to services at a lower cost (Lindgren et al., 2015). Many medical and mental-health related disciplines incorporate telehealth into their practice; however, the application of telehealth to the ABA field has been less researched (Tomlinson et al., 2018). Systematic reviews of the literature suggest that telehealth has been used to successfully teach interventionists (e.g., caregivers, support staff, teachers, other professionals) how to conduct functional analyses and preference assessments, as well as implement functional communication training, naturalistic and incidental teaching, behavior support strategies, and comprehensive training packages to children with ASD (Ferguson et al., 2019; Tomlinson et al., 2018).

Although the research is promising, previous studies lack the scientific rigor needed to establish telehealth as an evidence-based practice for ASD (Ferguson et al., 2019; Tomlinson et al., 2018). Moreover, no known study has assessed the efficacy of delivering ABA strategies via telehealth directly to adults with ASD. Despite limited empirical guidance, many providers of community-based adult services were encouraged to utilize virtual options in order to ensure continuity of care for participants as seen in the following case example.

A Case Example of Virtual Programming

After suspending in-person services, the Community Adult Autism Partnership Program (CAAPP) implemented significant modifications to transition entirely to telehealth. Logistical steps included identifying a HIPAA compliant platform (e.g., Zoom), securing confirmation that services delivered via telehealth would be supported by funders, ensuring that staff and participants were able to access and navigate the technology, and obtaining informed consent for telehealth services from clients and their families. The team developed and scheduled virtual trainings using behavior skills training (BST) to prepare staff to use the technology, document services, and embed their sessions with evidence-based practices and meaningful goals. For example, staff have been able to prompt participants through routines and daily living skills while also displaying task analyses and visual materials on the screen. Staff were especially encouraged to utilize BST and were able to enhance their training by incorporating video models of skills.

Telehealth allowed participants to maintain structure, socialize with peers, and continue to work on skills in a new virtual format. To provide a sense of familiarity, virtual social groups (VSG) were scheduled multiple times per day and were designed to mirror those previously offered in-person (e.g., arts and crafts, exercise, cooking). Team members frequently consulted with participants and staff to invite feedback about groups and make needed changes. For example, groups have been adapted to meet the needs of a wide range of skill levels and included suggestions for substitutions when materials were not easily accessible.

Groups that were most successful included visual supports, structured activities, opportunities to model skills, and incorporated advanced video conferencing features (e.g., reactions, private and public chats, breakout rooms, etc.). After developing a consistent VSG schedule, the team embedded opportunities to practice skills and work on projects related to groups during individual sessions. For example, participants met in smaller groups to practice conversational skills with peers following a more structured social skills lesson.

Participation in VSGs illuminated unforeseen benefits. Staff were able to provide prompts utilizing private chat features without interrupting the natural flow of conversation. Numerous participants reported feeling more comfortable engaging in the virtual platform and some individuals began attending groups for the first time. Many have taken more ownership of their programming, including advocating to plan presentations and lead groups.

Conclusion

Although utilizing telehealth with adults in community-based program models is still largely uncharted territory, times of crisis often inspire unique opportunities and creative solutions. Direct services and virtual groups have been vital in helping participants to continue their programming, maintain structure and consistency, and increase opportunities to socialize with familiar peers and staff during tumultuous times. As the world slowly readjusts to whatever new normal lies ahead, many people living with ASD will be armed with a new set of valuable skills to help them navigate an increasingly technological world. The benefits of telehealth have been outlined previously including increased access to supports and cost-effective service delivery. However, there might be additional benefits to utilizing telehealth with adults with ASD that need to be further explored. Although many are eager to reconnect in-person, it presents an opportunity to bridge the new virtual community with the brick-and-mortar one.

Kara Constantine, PhD, NCSP, is the Psychologist at Devereux CAAPP. Kate Langston Rooney, MEd, BCBA, LBS, is the Clinical Coordinator at Devereux CAAPP. Sasha Birosik, BA, is the Community Outreach Coordinator at Devereux CAAPP. Amanda Duffy, MEd, BCBA, LBS, is the Program Director at Devereux CAAPP.

For any additional information about the content of this article, please feel free to contact Dr. Kara Constantine at kconsta2@devereux.org or 610-688-4981 or visit www.devereux.org.

References

Ferguson, J., Craig, E.A., & Dounavi. (2019). Telehealth as a model for providing behaviour analytic interventions to individuals with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 49, 582-616.

Lindgren, S., Wacker, D., Seuss, A., Schieltz, K., Pelzel, K. Kopelman, T., Lee, J., Romani, P., & Waldron, D. (2015). Telehealth and autism: treating challenging behavior at lower cost. Pediatrics, 137(2), 167-175.

Mazurek, M.O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223-232. doi: 10.1177/1362361312474121.

National Autism Center. (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author.

Schall, C.M., & McDonough, J.T. (2010). Autism spectrum disorders in adolescence and early adulthood: Characteristics and issues. Journal of Vocational Rehabilitation, 32(2), 81-88.

Tomlinson, S.R.L., Gore, N., & McGill, P. (2018). Training individuals to implement applied behavior analytic procedures via telehealth: A systematic review of the literature. Journal of Behavioral Education, 27, 172-222.

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