When I first met 19-year-old Ben Breaux a couple years ago to interview him for a video I was making, he was sitting in his favorite rocking chair in his mother’s garden in Fairfax, Va. He rocked steadily, with noise-muffling headphones over his ears and an iPad in his lap. He reminded me of the nonspeaking children and teens on the autism spectrum I worked with years earlier as a social skills teacher at the Ivymount School in Rockville, Md.
I introduced myself to Ben and his helper (called a communication regulation partner), and she hustled over with his letter board, a device that she and his family say allows nonspeaking people to point to letters and spell out their thoughts.
Ben pointed to a “W” and then an “e” and eventually he spelled out: “Welcome to my Mother’s beautiful garden.” It blew me away.
Ben hasn’t spoken since he was a toddler, and told me he prefers the term “nonspeaking autistic” to describe himself. At the start of Autism Acceptance Month, I thought he might have some insightful thoughts during this global pandemic. Here’s our conversation, his part done through letter board, which has been edited and condensed.
Q: Living in a body that can act unpredictably, what advice do you have about coping with the covid-19 situation, which feels completely out of our control?
A: I often have to deal with the reality of having a significant loss of control over many various aspects of my life. Whether it be regarding personal body regulation issues, the continuous struggle for an academically based education or simply to be able to have greater independence in society’s eyes, we autistics are very used to meeting challenges and adversity head-on with determination and grit.
My mother says it is essential to acknowledge and admit to your fears and anxieties, but to be sure to not “reside” in them. I also know from personal experience that actually applying it may take some time and practice.
Q: What has the chaos surrounding covid-19 taught you?
A: I’ve realized I am much more connected to people all over the U.S. and the world than I previously thought.
I, myself, am so treasuring this extended time with my family, but also with many friends from a distance. I have been so enjoying being part of an online book club via Zoom for young people who use letter boards to communicate.
Q: Have you felt like you have a voice during this global crisis?
A: I have really valued my time spent discussing all types of topics with peers from around the world (United States, France, England, Ireland and Romania) on an online social forum for minimal and nonspeaking autistics.
We have discussed concern for loved ones during covid-19, and shared poems written by members that use written words to help convey their fears and anxieties, but also their hopes. You know how being a member of a group like this helps? We listen to what each other has to say, acknowledging fears and anxieties.
Q: Do you have any other advice for those struggling?
A: I hope everyone in areas affected by covid-19 tries to remember to be patient with themselves during this time of severe struggle and a redefining of a temporary new “normal.” Together we can do this!
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