It started with a fever and sore throat. Soon after, a test revealed that Jonathan Warfle was positive for COVID-19. When he became so sick that he needed to go to the hospital, his mom, Pam Warfle, worried. Jonathan, 21, has autism and while he speaks, he sometimes struggles to communicate what he needs.
“He can say, ‘I don’t feel good,’ but he doesn’t necessarily tell me why. And that’s when I have to go through and start saying, ‘Is that your head? Touch where it hurts,” Warfle, 52 of Perry, Michigan told TODAY. “That’s where it gets confusing and you have to add additional supports.”
Warfle had to leave Jonathan alone and wondered if he’d face problems without her. She understands why she couldn’t stay. Still, she shared her experience in the hopes policies will include how to better treat people with autism, disabilities and intellectual and developmental disorders as the pandemic lingers.
“We need to get to a point where we can accommodate them using the strategies that we know work for people with autism,” she said. “There was nothing I could do to help him, and he could not help himself in some of these situations.”
NBC’s Stephanie Ruhle shares her family’s COVID-19 journeyDec. 8, 202004:11
From fever to trouble breathing
On October 30, the family learned that Jonathan had COVID-19 and he isolated at home. At first, his mom didn’t worry too much because he simply seemed “uncomfortable and tired.” Then Jonathan’s breathing became really shallow and labored.
“He was very uncomfortable, very quiet,” she said. “He started to shut down more.”
On November 4, he had a chest X-ray and by the next day, doctors recommended he go to the hospital. Warfle supported him, which made things run smoothly.
“I got him into his little calm place. So, he did very well,” Warfle said. “They nurses were wonderful and acknowledged that my presence was helpful.”
But when he was admitted, Warfle learned she had to leave him.
“I discussed with Jonathan what was going on and that he would have to be here alone. I couldn’t hold my fear back anymore,” she said. “I just cried and he comforted me, and he said, ‘I’ll be OK, Mom.’”
She knows that it is tough for people to understand that Jonathan struggles with some concepts because he excels in other areas.
“If it’s anything that’s abstract or anything where he’s getting two or three pieces of information at the same time that build on each other … he needs to have support put in place for that,” Warfle explained.
During his stay, he was mostly flustered and unable to understand why he couldn’t go to the bathroom alone or why people kept fussing around him. Sometimes when she called, he just growled.
“He lost his words. He wasn’t able to process it,” she said. “With somebody with autism, you've got to be able to take the time to notice that something's going on. I get it — that's a lot to expect out of these nurses who are so overwhelmed.”
She called once around midnight when the nurses were struggling to get a blood sample from Jonathan.
“They had tried three times. And he started to resist and say, no, he wasn’t doing it,” Warfle said. “I started to tell them, ‘I just need a call. You have to at least call me and let me know this is happening because I can talk him through it.’"
Luckily, the staff did start relying on Warfle. She still felt helpless during the six days he spent in the hospital. Then her mother tested positive for COVID-19 and needed to be hospitalized, too. While she was not intubated or put on a ventilator, she was in the hospital for 16 days and still hasn’t “bounced back,” since returning home.
“My mom’s really struggling,” Warfle said of the 83-year-old. “She probably will have some type of long-term repercussions physically from this.”
Sharing their story to make a difference
Jonathan is back home and mostly back to his old self. Though he did make one uncharacteristic comment.
"He said, 'I miss you guys,' which that's not something he's ever said," Warfle said.
She's sharing their story because she hopes that she can help influence care for people with autism and disabilities.
“Their policies are currently going by an age. Or in this case COVID (restrictions),” she said. “We're missing key components to the whole person, which is, in this case, the inability to totally process and understand what's going on.”
Warfle also understands that right now, hospitals and medical staff are at a breaking point.
“I just want people to also speak up and advocate and try to be involved — but do it in a way that you can advocate working together with understanding of what the medical people, doctors, nurses, the hospital, are going through,” she said. “They are so taxed right now and spread so thin.”
Most importantly, she wants people to take the pandemic seriously. She’s still wondering how Jonathan, who is mostly isolated except for a life skills class, contracted COVID-19 and believes if more people masked up and socially distanced the spread would slow.
“I would really like if we could … (get) the politics out of it so we can just focus on what we can do to be safe for others,” she said. “We really just have to do our part.”