The Autism Experience: Collaboratively Exploring Science, Viewpoints, and Experiences of Autism Spectrum Disorder
Written by George Washington University Student, Gary Sang.
“The Tribe are experts themselves. They know themselves and are experts in what is going on in the field of autism,” said Dr. Sean Cleary, professor of epidemiology.
At the Milken Institute School of Public Health, Dr. Cleary advances the research of young adults and adults with Autism Spectrum Disorder (ASD). Through his graduate residential course titled ‘The Autism Experience: A Public Health Perspective’, undergraduate and graduate students at The George Washington University (GW) explores the science, viewpoints, and experiences of ASD with their non-speaking, autistic young adult classmates known as The Tribe.
Dr. Cleary’s service learning and community-based participatory research course focuses on the transition between young adulthood to adulthood. This includes topics surrounding issues of improving quality of life and wellbeing, health and mental health, advocacy, housing, support for families, and interpersonal relationships. Throughout thirteen weeks, guest lecturers introduce their field of expertise and the intersections with ASD, such as eating disorders and ASD, current research on social motivation in autism, housing options for autistic adults, and more.
“The Tribe wanted a course to learn and wanted to get experts in the field and areas where they are interested in learning,” commented Dr. Cleary. “I have only run this course twice and it has been different both times. It will be different in every time, because what I am trying to do is understand what worked, what areas do they feel we had enough information, and what areas do we want more information about.”
Although main goals of the course are to introduce community-based participatory research to students at GW, engage with members of the community, and hear their voice, it also fosters workforce development. Dr. Cleary stated, “what has been clear to me, besides the little research done on autistic adults in the U.S., is that we need to be training people to go into fields that will serve autistic adults.”
A cross-sectional online survey study comparing healthcare experiences in autistic and non-autistic adults found autistic participants reported greater unmet healthcare needs, higher use of the emergency department, and lower utilization of some preventative services, along with noting worse patient-provider communication and patient self-efficacy. In another report survey, providers also described feeling uncomfortable with their level of training regarding autistic patients.
“I will take what I learn in this class and be more mindful when approaching patients who are autistic or who may have other disabilities,” commented a graduate student of the course who will be attending medical school. He continued, “the main thing is to not judge up front. We must work with them to try and figure out the best way to work and communicate with the individuals.”
As her biggest takeaway from the course, Teaching Assistant Jessica de Voest mentioned, “ASD does not mean intellectual disability and nonspeaking does not mean low IQ.” Claire Viscione, an undergraduate student studying public health, commented, “we should not judge a book by its cover. It has been incredible to learn just how intelligent, funny, kind, and forward thinking The Tribe truly is regardless of the ways that they communicate.”
The Tribe members also enjoyed and learned from Dr. Cleary’s course. Emma Budway, a member of The Tribe stated, “I have gained a lot of confidence. I now know I can do college level work. I also learned I do well with online learning.” As for fellow Tribe member Benjamin McGann, he said, “I learned that some comorbidities found in autism, like diabetes, can be prevented. The course really made me understand the importance of healthy food choices.”
Along with lectures, Dr. Cleary coordinated weekly yoga sessions and virtual get-togethers to foster relationships in the course. Claire Viscione mentioned, “My favorite memory from class is going to yoga and South Block on Fridays with classmates and members of the Tribe. It was really great to get to know everyone better outside of class through an activity everyone could enjoy!” Emma Budway also stated, “It was great meeting everyone at yoga, South Block, and zoom meetings.”
As the course concluded in May 2020, Dr. Cleary hopes The Tribe realizes they are essential to the course. He comments, “I don’t think this course would be meaningful without them. I value them being in the course and contributing in the course.”
Tribe member Nicholas Moore mentioned, “the opportunity to be in a class like this was overwhelming for many reasons. It allowed me to elucidate. The chance to teach others the truth about autism is a chance of a lifetime.” Dr. Cleary will continue to offer the course in the Fall 2020 semester at GW.
Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief Report: The Medical Care of Adults with Autism Spectrum Disorders: Identifying the Needs. Journal of Autism and Developmental Disorders, 42(11), 2498-2504. doi:10.1007/s10803-012-1496-x
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. Journal of general internal medicine, 28(6), 761–769. https://doi.org/10.1007/s11606-012-2262-7