Social distancing

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Being introverted, I get a lot of "If you just got out more you'd start to like it!" Now the tables are turned.

Maxfield Sparrow, writing in reaction to an article about people feeling drained as they try to read faces on video calls, points out that “we Autists live with these discomforts all our lives.” 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.”

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.”

Maxfield Sparrow, writing in reaction to an article about people feeling drained as they try to read faces on video calls, points out that “we Autists live with these discomforts all our lives.”

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.”

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.

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.”

On the other hand, it's super distressing hearing everyone talk about how horrible living life like this is. They're all talking about increases in depression and anti-depressant meds, increases in drinking, etc... all these guides and self-help apps and stuff to help people "cope with social isolation"... and I'm just here like "Wow, is it really that terrible being me?"

I'm enjoying social distancing. It's nice to get around town without people standing right behind me. I don't feel rushed in checkout lines anymore. It's a welcome change.

While some people on the autism spectrum are struggling with the pandemic, a subset of that group — for whom a socially distant world is ideally suited — is actually thriving.

Dr. Wendy Ross is hoping members of that subset can provide advice for people having difficulties adjusting to workplace and environment changes that have occurred during the Covid-19 outbreak.

“There is a lot to be learned from some people on the spectrum about remote learning and remote interactions,” said Ross, director of the Jefferson Center for Austim and Neurodiversity. “I would not wish Covid on the world, to be clear, but this is an opportunity for people who have traditionally been seen as different, or people who are seen as needing to learn how to be social. Here is an opportunity for them to be the educators and the leaders. It’s a role-reversal.”

The Jefferson Center has begun what it is calling a "series of conversations" with autistic individuals with a goal of being able to develop models, and potentially coaching, in a world where some form of social distancing is expected to be the norm — at least for a while.

“Over the past few months I have been hearing from colleagues who are on the spectrum, and from parents of kids with autism, about how some of them are flourishing with less social face-to-face pressure — and have been supporting their neurotypical peers and siblings in navigating the new world,” Ross said.

“I think the Covid world is an opportunity for those who are neurodiverse to shine and provide strategies for those of us for whom this situation is less innate, just as we previously guided them in a more social world.

“Unfortunately it seems as though some degree of social distancing will be with us for a while. We will need to utilize all minds in order to successfully navigate the future. Drawing from the experience of those with autism highlights that we are all on the human spectrum and can all learn from each other,” she said.
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Ross said autistic people who are young, nonverbal and rigid about their schedules are having a tough time with some of the changes brought about by the pandemic. “But I just had one mom say to me it was as if her son has been training for this all his life, and he was doing much better than her neurotypical children,” she said.

Ross said the center is working with Thomas Jefferson University on a course about autism and design. She noted aspects of design that support autistic people, such as expanded entryways, will have value in a post-Covid world.

Offices that embrace open space environment, she said, will need to think about providing barriers and closed spaces to keep employees safe now and consider what office needs will be going forward.

“Nobody really knows what the post-Covid world will look like,” Ross said. “There will be questions about whether people need to be at an office, or if they can be more productive at home. We don’t want people to always be isolated, but we will need to look at is there a way to balance the previous expectations.”

Jennifer Cook, a best-selling author and a consultant with the Jefferson Center for Autism, was diagnosed with Aspergers syndrome when she was in her mid-30s.

Cook, who works from her home in Charlotte, has no doubt the neurotypical community can learn from those on the autism spectrum during this type of social distancing.

“We are all part of the human spectrum,” Cook said. “And we need to equip the human spectrum with all the perspectives we possibly can. … The most amazing discoveries only happened because people thought differently.”

With businesses relying heavily on Zoom meetings and online interaction, she said, it’s important for employers to understand people learn differently. One suggestion Cook has for businesses using webinars to share information is to include closed-captioning during the event and then follow it up with a transcript so people can process the information in whatever manner suits them best.

Communication is a huge challenge in a world where people are social distancing and staffs are working remotely.

“There are serious communication skills you can learn in five minutes,” Cook said. “If you teach them, you will have much more productive employees.”

One example, she said, is the quality of words somebody chooses and the need to use more adjectives to paint “verbal pictures.”

Cook said people on the autism spectrum are also good at forging and maintaining friendships online.

“We can acknowledge and extrapolate close digital friendships,” she said. “We don’t see a hierarchy of friendships the same way neurotypical people do. If we see the connection, it's there, it’s done, period.”

Cook said another lesson employers may learn from mandatory social distancing is how employees can be more productive working from home, where it is easier to control their environment, and letting them set their hours to the times they feel the most motivated.

“Anxiety levels go way down when you feel in control,” she said.

Cook has her doubts the neurotypical community will take to the role of students with those on the spectrum being the teachers.

“They could be good students if they can look and listen without being intimidated by the words,” she said. “To me, it's so heartbreaking to know the world will continue to see us as the ones who need to be educated and changed.”

Ross thinks it's doubtful businesses will go back completely to the way things were, and it’s likely some sort of hybrid work model — one that combines working from home and being in the office — will be tried.

“The push [during the pandemic] is to be not as social face-to-face,” she said. “There are people with autism for whom that is natural. So what can they tell us? I don’t have all the answers, but we are starting to ask the questions.”