This past spring, Nita Baliga and Abraham Kwan were both enrolled in Dr. Sean Cleary’s course titled “The Autism Experience: A Public Health Perspective.” at the George Washington University. Through this course, graduates and undergraduates work together with non-speaking individuals with autism to learn more about the experiences and challenges non-speaking individuals with autism face.
Initially, both of us had limited experience working with individuals with autism, let alone non-speaking individuals with autism. Still, the idea of learning more about community-based participatory research (CBPR) within that population was intriguing. A part of CBPR is about involving the target population in the study since they know the gaps in research. Throughout the course, we learned more about our non-speaking peers with autism during and outside of class. Before COVID-19 quarantine, we had weekly yoga sessions followed by trips to a local acai bowl shop. After COVID-19 quarantine started, we wanted to continue the conversation, so we had weekly open discussion calls over Zoom that continued even after the class had concluded. The friendships we built with both them and their parents helped motivate us to do something to help improve the autistic community.
When Paula Manion, founder and chair of City Center NOVA, spoke to our class about the disparities in communication between healthcare professionals and non-speaking individuals with autism, we started brainstorming how to develop a solution to bridge that gap and improve the relationship between healthcare workers and the autistic community. We wanted to incorporate the process of CBPR into our solution, so we obtained information from not only published research and Paula’s presentation, but also feedback from the non-speaking individuals with autism in the class.
We turned these ideas into a customizable healthcare communication pamphlet. The pamphlet provides both a general overview of how the healthcare workers can effectively communicate with non-speaking individuals with autism, as well as advice for the families on how they can prepare for a medical appointment. We understand that this solution does not replace improved healthcare training or other underlying barriers, including access to healthcare, but we hope that this pamphlet can be a steppingstone to help improve the relationship between healthcare providers and non-speaking individuals with autism. The pamphlet is designed to be printed double sided and is provided as a Microsoft Word document so that each individual can insert their picture and customize it to fit their specific needs. Moreover, this pamphlet can be generalized to improving the communication between non-speaking individuals with autism and any person (teachers, neighbors, etc.) who have never interacted with this community before.
Download their Healthcare Pamphlet here: Healthcare Worker Communication Pamphlet