Inspiration for “Stay Safe & Self Advocate” Came From An All-Too-Familiar Scene
In May of 2020, an ASN’s board member’s family member (who is a disabled individual) was recently on a bus of developmentally disabled individuals as part of a workforce development program. The direct support professional (DSP) working with these individuals asked each person a question before boarding the bus: “Does anyone feel sick or have a cough today?” Each person answered in the negative, but when temperatures were taken, one man was measured to have a very high temperature, and indeed later tested positive for COVID-19. When questioned why he did not answer the DSP’s question in the affirmative, it was determined that he did not equate fever symptoms with the concept of “feeling sick.”
(Individuals did not ride with the bus with the infected person. The individual who tested positive received medical care promptly. Proper protocol was followed regarding quarantining of potentially exposed individuals.)
Many of us with experience with individuals on the autism spectrum were not surprised to learn of this series of events. Being able to translate bodily senses into feeling words about health is a documented concern among people on the autism spectrum. The concept of sensing feelings happening inside one’s body is called interoception and one of the leading scholars on interoception is Kelly Mahler, OTD, OTR/L, who is a key contributor to this project.
While communicative barriers exist, steps can be taken to bridge gaps between autistic and non-autistic people in this important time. Steps can be taken by both autistic and neurotypical people to learn more. Through the “Stay Safe & Self Advocate” campaign, ASN seeks to provide expert advice to both audiences.
While some videos have been produced for neurotypical audiences regarding autism, coronavirus, and health-related self-advocacy, woefully few videos have been produced that directly address people on the autism spectrum. ASN staff has not aware of any publicly available videos that teach health-related self-advocacy specifically to individuals on the autism spectrum beyond the basic self-protection methods.
As our state (and our hemisphere) experience the cold and flu season of Fall, Winter, and Early Spring, ASN seeks to ensure as many people as possible see the valuable information on this site.
