'I'm Living Through It, I'm Coping': How Two Kansas City Men With Autism Are Dealing With The Pandem
Most of us have felt the added layer of anxiety with this pandemic. The need to cover our faces. To social distance. To stay home.
The New York Times recently described this moment as an “ongoing, wavelike, poorly understood threat that seems to be both everywhere and nowhere.”
Some people have expressed anger, lashing out verbally, even physically when asked to wear a mask.
As the numbers of sick and dying continue to climb, the mental health community is talking about the rise in depression and anxiety. According to the Kaiser Family Foundation, 53 percent of adults polled in July said pandemic-related worries have had an adverse impact on their mental health. That’s up from 39 percent in May.
Now, imagine you are someone who lived in a heightened state of anxiety even before the coronavirus.
This is a story about two young adults with Autism and how they are experiencing the pandemic.
Kiper Prince is 27. He’s a big guy, something like six feet, three inches with a big personality. He has never met anyone he didn’t want to meet: a check-out clerk, a restaurant server, a friend of a friend.
“Hello, my name is Kiper,” he offers, unprompted. “That’s Kiper with one 'P.'”
The next question is “When’s your birthday?” Once he’s gotten you to divulge the year, he quickly reminds you exactly how old you are.
Kiper is my nephew. I know him intimately. I recently sat down with him and his mother, Sara Prince, to talk about how Kiper is handling the pandemic.
His intellectual and developmental disabilities come with heightened anxieties but are well regulated by medication. The pandemic has added a level of chaos none of us could have imagined. For Kiper, it's immediate.
“I want trick or treaters to trick or treat here on Halloween and to get together with family at Thanksgiving and Christmas,” he says as part of a daily conversation about when we will be able to gather in large groups.
“Can you understand how parents want (their kids) to be safe if they don’t have a vaccine yet?” his mother replies.
Holidays are important to Kiper. Birthdays also are a big deal. We typically go to a restaurant. His parents give him a certain number of guests he can invite, which is always a challenge. The list is limited this year due to social distancing requirements in restaurants. And he’s aware it might not happen at all.
“I don’t like it that I can’t go out to eat to celebrate my birthday,” he says.
Experts say people with autism like structure, a schedule. Kiper’s regular schedule ended in March. His day program at Heartstrings Community Foundation shut down. He left his group home because it went on lock down. Studies have shown that, like nursing homes, group homes have seen a disproportionate number of infections. Other activities like Special Olympics and social groups have been cancelled as well. For Kiper, this is like withdrawal.
“I’m living through it, I’m coping,” he reassures his mother. “I’m trying not to get upset, I really am. I bet everyone else is getting upset, too.”
Then she reminds him of some of his coping skills like deep breathing, or if he’s really escalating, leaving for his room or another quiet place.
“He’s grown a lot during the pandemic,” Prince says. “He takes a walk now independently. He leaves and comes back on his own. I think it’s really therapeutic for him. He calls people. He writes letters and looks forward to getting the mail.”
I left Kiper at his kitchen table, his I-pad propped up on an overturned bowl, participating in a Zoom call with friends. He looked happy.
Experiencing the pandemic in a variety of ways
Dr. Laura Gaffney is a pediatrician and internal medicine doctor with Advent Health Medical Group who sees mostly patients with a wide variety of special needs.
“They’re having a harder time than the general population,” she says. She is seeing heightened emotional instability. Some have expressed a feeling of abandonment without their usual supports and interactions.
“One young man that I see felt he was in jail because he could not leave his place of residence,” she said.
Gaffney says the pandemic highlights how people with special needs are often discounted or underestimated.
“Even if they don’t appear to be listening, paying attention or having emotions, they have those emotions,” she said. “They feel the anxiety in an empathetic way from their cohorts, their families, their caregivers.”
A time for good memories
Connor Henry feels the pandemic was the best thing that could happen to him at the end of his senior year at Park Hill South High School. “I was relieved to say the least,” he said over a recent Zoom call. “It allowed me some time to get out of the war zone, mentally. To re-calibrate myself. To relax more. “
Henry has autism and for him, the halls of the high school were disturbingly loud and crowded. He could never figure out the right thing to talk about with his peers. He felt their values were different and that no one was interested in what he had to say.
He wasn't bullied, he says, but he saw others like him being bullied, so he just stayed quiet. Invisible. Like a ghost at a party is how he put it, or even torture.
“It was like being in prison without your feet being beaten,” he said.
Since the stay at home orders, Henry has been able to be himself. He can ask what someone means or raise a question about homework without being embarrassed.
He can play the Euphonium and Trombone when he wants to, talk about his passions, like mythology. Or not talk at all if that's how he feels.
He's grateful for the loving embrace of his father and mother, sister and brother.
“It’s a time for me to have good memories," Henry said. “The growth time for me was high school. This is growing in relaxation, not in perseverance.”
For Connor Henry and Kiper Prince, the pandemic has been just another obstacle to navigate with their unique challenges, skills and resources.
Kiper has a poster he and his mother made that outlines what a resolution to the pandemic might look like - people starting to gather again, going back to work.
At the bottom is a quote he reads aloud: “You can’t change the past but you can ruin the present by worrying about the future.”
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