When the pandemic hit southern California, Hector Ramirez, 45, tried to hang on to some of the guideposts in his usual day routine: waking up at 6 in the morning, making his bed, taking a shower, walking his service dog in his Chatsworth neighborhood. While walking his dog, he used to try to greet at least 30 people before returning home. This ritual grounded him and connected him to the world. After the pandemic hit, his walks became quiet and his routine became disrupted. He has had to cope with similar stressful situations before as he spent part of his youth in an institution in Camarillo separated from his family, saying “like many people with disabilities, I’ve dealt with social isolation whether I wanted it or not. I have years of experience being separate from society”. While I’ve never been in an institution, my Asperger’s makes me feel that I have been separate from society – but I’ve also had the chance to be part of it. I do get to greet people on walks or on errands, although not as frequently now given the circumstances. Think of it as visiting another country where you spoke the language, but then moving to a country which speaks a version of the same language you don’t know as well. It’s similar to what you knew but still tough to connect.
My story is mine, but I know it’s not yours. People with autism have a wide range of experiences that resist being generalized in an easy fashion. In interviews with the LA Times, a number of autism spectrum adults say while the pandemic can be especially stressful for people with autism, spectrum adults are actually better prepared than non-spectrum individuals. A lot of autism spectrum people have had practice in dealing with the same challenges now affecting the general population: social isolation; disruptions in routines; and economic strain. They hope these experiences may actually help people without autism to better understand them. I feel the same way.
Barry M. Prizant, an adjunct professor at Brown University and author of the book “Uniquely Human: A Different Way of Seeing Autism” says that uncertainty, unexpected events and lack of control are the major stressors for people with autism and with the pandemic, they’re now major stress factors for neurotypical people too. Maxfield Sparrow, reacting to an article about people feeling drained as they try to read faces on video calls, points out that people with autism live with these discomforts for life, adding that if they feel socially disoriented by Zoom and are desperate for this pandemic to be over so they can return to comfortable and easy socializing, “please lean into that feeling and remember it later”. I’m holding on to the memories of before all of this and looking forward to when that will be the new normal once again.
Autism is a very complex developmental disability. It can affect how people think, communicate, move, socially interact, and process sensory information; it can shape how people live, like needing support with day-to-day living skills; some may be extremely verbal while others have very limited or no speech at all and use other ways to communicate; some are very interested in specific topics; many of them also have other disabilities affecting their day-to-day lives. To make sense of a stressful and unpredictable world, many autistic people find comfort in routines and other coping mechanisms addressing their own unique needs. Prizant says routines provide a sort of road map for making the world more predictable. He adds what can help all of us, even people who don’t think they are on the spectrum – that all humans benefit from having predictability in their lives. People on the spectrum crave it because there are many more stressors in their lives than for people who aren’t on the spectrum. These anchors can be a coping comfort, but there are limits (The Big Bang Theory is a great example if you want to explain this to non-spectrum people in your life: just don’t follow Sheldon Cooper’s example: he keeps track of what he eats for dinner, what pajamas he wears every night, even when he goes to the bathroom if you can believe that (don’t try that at home).
Many of these stressors have been made worse because of the pandemic. Julia Bascom, executive director of the Autistic Self Advocacy Network, says her group is very concerned about some people with autism who might not be able to receive needed assistance with simple tasks like getting dressed, preparing meals, or managing medication which they’re usually provided at their homes or in their communities. Children and teens with autism may not be getting the added support they would usually have in school or may have trouble processing their online lessons. College students with autism have had to cope with their campuses being closed as well. Mandy Wall, who has recently graduated from Sarah Lawrence College, says when “they” (the pronoun she uses) first left campus and rejoined their parents in Connecticut, they could barely function and sleep was impossible without a Xanax. Her boyfriend even had to remind her to brush her teeth and take a shower.
During this time, a number of autistic advocates were alarmed that some states set out guidelines for rationing ventilators and prioritizing healthcare, which Bascom calls a clear violation of the Americans with Disabilities Act. California Governor Gavin Newsom’s administration was blasted for initially telling hospitals to prioritize younger patients with longer life expectancy. People with autism are also dealing with the stress of the economic collapse. Ray Borene, a 32-year-old from Pennsylvania, had to stop working as a pottery teacher at a community studio. He said it was the only job he was able to succeed at. He was not diagnosed until adulthood and sensory issues led him to drop out of college and quit a string of jobs where he felt taxed by noise and bright lights. He said that while teaching pottery, he could control his schedule, was very tactile and it was more hands on instead of talking and he connected with his students. When the coronavirus hit, the studio had to shut down due to it being “impossible to sterilize everything” and Ray, who can’t drive, is stuck at home and a new level of isolation. I feel the same way, Ray. I can’t go to a lot of places I like walking to, like the small historical museum or the small library up the block from me, but I’m trying to hold on to when I can go there again and Ray, I hope you can try to do the same.
This is a chance for the autistic population and the non-autistic population to see each other’s viewpoints. The pandemic has also made people with autism learn to cope with the stresses the general population face. Kris Guin, an autistic transgender man from D.C., says that throughout his life he became very adept at creating coping mechanisms for things and the first couple weeks of this were the hardest for him, but then he learned to shift gears. Some spectrum people are already pros at social distancing either because social interaction is stressful or they’ve had to cope with unwanted isolation. Carly Fulgham, president of Autism Society Ventura County who was diagnosed with autism as an adult, says being able to step away from face-to-face interaction is actually a relief. Whenever she talks to someone and they cross their arms, she says she becomes distracted with trying to describe their behavior. For autistic people who were victims of bullying in their youth, she adds that social isolation can be a coping mechanism to keep themselves from being hurt. Ido Kedar, a 23-year-old autistic author and student from West Hills, had his first method of communication, a letter board, when he was 7 years old. He says he now laughs because he finally sees his autism as an advantage, although his early experiences have made him an introvert. He adds introverts need fewer people in their day but they still need people. In the words of John Donne, “No man is an island”, and this needs to be taken into account more than ever now.
46-year-old Carrie Serlin of Phoenix says she misses the people who used to be part of her routine: the bus drivers from Dial-a-Ride who drove her to her job at Social Spin Laundromat, which employs adults with intellectual and developmental disabilities; her supervisors; the people who give her an iced coffee. At home away from her job, she continues to work during the day, braiding laundry baskets out of plastic bags for the laundromat to sell. She says when she leaves her house, everyone is so worried about catching something that they don’t even say hello to her. Like Carly Fulgham, I don’t mind not having face-to-face interaction for a short amount of time, but I do like it when people nod to me or say hi to me while I’m walking along the street, so I know how Carrie feels when she says that.
Dena L. Gassner, an adjunct professor of autism studies at Towson University in Maryland, who has autism herself and was a PhD candidate at Adelphi University on Long Island, says she’s seen a divide in how autistic people are faring in these times, with some saying their “living their best lives” to others full of anxiety. She worries a great deal about autistic people who don’t have the means to reach out for resources and the people who catastrophize, with anxiety that’s not well-managed and who think in black and white are at great risk right now. I have a prayer that goes out to everyone dealing with the intense anxiety and confusion and chaos of all of this, spectrum people and general population alike.
Hector Ramirez still tries to connect with his neighbors by waving at people beyond his window (waving through a window if you will – I’m a fan of “Dear Evan Hansen”). When he does go out on walks, people sometimes hold up written messages to him, like saying it’s nice to see him again and asking for help with certain things. He has since started a new routine by volunteering at a food pantry that delivers meals, which helped restore his sense of purpose. Ramirez, who is also a board member with Disability Rights California, says that “people with disabilities are the experts in coping with social isolation, not because we want to, but because we’ve had to”.
It’s hard to maintain a sense of optimism in times like these, but I’ll put the link for a song from the Broadway musical of SpongeBob SquarePants to try to do that. SpongeBob would see the good side of everything by nature and while I don’t think he’s lived through something like this, I think he’d try his best to keep a good attitude. The same can be said about Emmett Brickowski from the Lego Movie franchise with the song “Everything is Awesome”. While everything may not be awesome now, everything will be awesome again soon.