Voices from the spectrum: Autistic people deal with the coronavirus
When the coronavirus hit Southern California, Hector Ramirez tried to hang on to some of the guideposts in his usual routine: Waking up at 6 a.m. each day. Making his bed. Showering. Heading out to walk his service dog in his Chatsworth neighborhood.
Ramirez, who is autistic, used to try to greet at least 30 people before he returned home, a ritual that grounded him and connected him to the world. Now his walks are quiet; his routine, disrupted.
But Ramirez has had to cope with such stresses before. “Like many people with disabilities, I’ve dealt with social isolation whether I wanted it or not,” said Ramirez, 45, who spent part of his youth in an institution in Camarillo, separated from his family. “I have years of experience being separate from society.”
Autistic people have diverse experiences that resist easy generalization. But in recent interviews, a number of autistic adults say that although the pandemic can be especially stressful for people on the spectrum, many are practiced in dealing with the challenges — social isolation, disrupted routines, economic strain — that are now affecting the general population. And they hope that those experiences might help people who aren’t autistic to better understand them.
Uncertainty, unexpected events and a lack of control are “the major stressors for people on the spectrum,” said Barry M. Prizant, an adjunct professor at Brown University and author of “Uniquely Human: A Different Way of Seeing Autism.” Now that the coronavirus has hit, “that’s so much of what we’re talking about, as they are now major stress factors for neurotypical people — the rest of us.”
And Sparrow adds: “If you are socially disoriented by Zoom and desperate for the pandemic to be over so you can return to comfortable, easy socializing, please lean into that feeling and remember it later.”
A wide spectrum
Autism is a developmental disability that can affect how people think, communicate, move, interact socially and process sensory information. It can shape how people live in a wide range of ways: Some autistic people need support with day-to-day living skills, while others live independently.
Some people on the spectrum are extremely verbal, while others may have limited or no speech and instead communicate in other ways. Some are keenly interested in specific topics. And many people with autism also have other disabilities that affect their day-to-day lives.
To make sense of a world that can be stressful and unpredictable, many autistic people have found comfort in routines or other coping mechanisms that address their unique needs. Routines, Prizant said, provide a “road map” for making the world more predictable.
“All human beings benefit from predictability in their lives,” Prizant added. “People on the spectrum crave it because there are so many more stressors in their lives.”
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Many of those stresses have been exacerbated by the coronavirus. Julia Bascom, executive director of the Autistic Self Advocacy Network, said her group is deeply concerned that some autistic people might not be able to receive needed assistance with day-to-day tasks such as getting dressed, preparing meals or managing medication — services usually provided at home or in the community.
Children and teens on the autism spectrum may not be getting the added support they usually have in school, or they may be having trouble processing their online lessons.
And college students who are autistic have had to cope with campus closures as well. Mandy Wall, a Sarah Lawrence College senior who is about to graduate and who uses the pronoun “they,” said that when they first left campus and rejoined their parents in Connecticut, they “could barely function.” Sleep was impossible without a Xanax.
“My boyfriend had to remind me to brush my teeth and take a shower,” Wall said.
During the pandemic, autistic advocates have been especially alarmed that some states have set out guidelines for rationing ventilators and prioritizing healthcare, which, Bascom says, are “very clearly a violation of the Americans with Disabilities Act.”
In California, Gov. Gavin Newsom’s administration was blasted by advocates for people with disabilities for initially advising hospitals to prioritize younger patients with longer life expectancy — guidelines that were then quietly removed and replaced.
‘My boyfriend had to remind me to brush my teeth and take a shower.’
— Mandy Wall, a Sarah Lawrence College senior coping with campus closure
And if all of those worries aren’t enough to process during the pandemic, adults with autism — who already tend to be economically marginalized — are also dealing with the stress of the economic collapse.
Ray Borene, an autistic 32-year-old who lives in Pennsylvania, recently had to stop working at “the only job I was ever able to succeed at.”
Borene, who was not diagnosed until adulthood, said that sensory issues led them to drop out of college and quit a string of jobs where they felt taxed by noise and bright lights. It wasn’t until Borene found work teaching pottery at a community studio that they thrived.
“I could really control my schedule. It’s very tactile. And instead of talking to people all day, it was hands on,” Borene said. “I really connected to the students.”
Then the coronavirus hit and the studio had to shut down, since “there’s no way of sterilizing everything.” Borene, who cannot drive, is now back at home at “a completely new level of isolation.”
Coping with stress
The pandemic has also highlighted the ways in which some autistic people have learned to cope with the kinds of stresses that now preoccupy the broader population.
“Being autistic, over the course of my life I’ve had to become very adept at creating coping mechanisms for things,” said Kris Guin, an autistic transgender man who lives in Washington, D.C. “The first couple of weeks were the hardest. But then I sort of learned to shift gears.”
Some people on the spectrum quip that they’re already pros at “social distancing” — either because social interaction can be stressful or because they have had to cope with unwanted isolation.
Carly Fulgham, president of Autism Society Ventura County, says that being able to step away from face-to-face interaction is a bit of a relief.
“Not having in-person interactions actually makes things easier,” said Fulgham, who was diagnosed with autism as an adult. Whenever she is talking to someone and they cross their arms, Fulgham said she becomes distracted trying to parse their behavior, wondering, “Does that mean they’re cold, or do they not want to talk to me anymore?”
And for autistic people who were bullied as children, Fulgham added, “social isolation can be a coping mechanism to keep themselves from being hurt again.”
Ido Kedar, a 23-year-old autistic author and student who lives in West Hills, had no way to communicate until he was 7 and started using a letter board. Kedar said in an email that “I laugh thinking that finally my autism is an advantage in life.”
“Yes, my many years being cut off from others makes me used to it, though I can’t say I like it,” Kedar wrote, explaining that those experiences had made him introverted.
As an introvert, “we need fewer people in our day,” he said, “but we still need people.”
In Phoenix, 46-year-old Carrie Serlin said she misses the people who used to be part of her routine: The bus drivers from Dial-a-Ride who shuttled her to her job at Social Spin Laundromat, which employs adults with intellectual and developmental disabilities; her supervisors; the people behind the counter where she gets an iced coffee.
At home, she continues to work during the day, braiding laundry baskets out of plastic bags for the laundromat to sell. When she does leave the house, “everyone is so worried about catching something that no one says, ‘Hi,’” she lamented.
Dena L. Gassner, an adjunct professor of autism studies at Towson University in Maryland, said she has seen a divide in how autistic people are faring, from some who say, “I’m living my best life” to others mired in anxiety.
“I worry a great deal about autistic people who don’t have the wherewithal to reach out for resources,” said Gassner, who is autistic and is currently a PhD candidate at Adelphi University on Long Island. “People who catastrophize, whose anxiety is not well-managed, and think in black and white — they’re at great risk right now.”
Ramirez still tries to connect with his neighbors, waving at people beyond his window. When he is out on his walks, sometimes people hold up written messages to him, such as “Nice to see you again” or “Can you help me get some eggs this week?”
He’s stepped up his volunteering at a food pantry that delivers meals, a new routine to restore his sense of purpose.
“People with disabilities are the experts in coping with social isolation,” said Ramirez, who is also a board member with Disability Rights California. “Not because we want to, but because we’ve had to.”
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