BETHLEHEM, Pa. (WLVT) - Amanda Augustine was out the door shortly after sunrise, mask in hand, to get some exercise, being mindful of Pennsylvania's "stay at home" order due to the COVID-19 pandemic.
"[I feel] claustrophobic at times," she said, "because I don't like being stuck indoors for long periods of time."
Augustine, 31, has autism spectrum disorder (ASD), more commonly known as autism. She's able to live on her own, and three days a week, her behavior specialist Lauren Burlew stops by to spend a few socially-distant hours with her in person.
"We go for walks," Augustine said, "and she's emotionally supporting me."
Burlew has worked with Augustine for four and a half years through Via of the Lehigh Valley, a Bethlehem-based nonprofit that provides services to people with disabilities like autism.
"A lot of people with autism need structure and routine, and we're trying to maintain as much of that structure and routine as possible, and a lot of people like Amanda who live by themselves are reliant upon these supports," Burlew said. "We've been using virtual supports through Skype or Samsung video chat, just to try to like make sure that people -- even if they can't be meeting with us physically -- are still maintaining their routines, still have their self-care plans in place, and are still maintaining their goals, whether it's social skills or communication goals.”
COVID-19 has drastically impacted life for everyone, and for those on the autism spectrum, significant change can be tough to handle.
"[I miss] my class, my Knitters Edge class, [and] going out in the community more often," Augustine said.
Because autism is a spectrum disorder, the range of symptoms is wide -- and so is the severity. Some of the symptoms include challenges with communication and social skills, as well as repetitive behavior and obsession.
Julie Trebat, a board-certified behavior analyst who works with kids who have autism through organizations like KidsPeace and Autism Society Lehigh Valley, said the pandemic has significantly impacted parents and children.
"If you can imagine a single mom going to the grocery store -- and she has to take her child with autism, because she doesn't have a choice -- that child may not be willing to wear a mask, because she can't explain it to them, because they don't have the language to understand those words," she said. "I think that the best thing that we can say is that people can be extra kind when they see a child that's behaving in a way or an adult that's behaving in ways they don't expect, because it may be that person really can't understand what's happening right now."
The Centers for Disease Control and Prevention (CDC) says 1 in 54 children in America is diagnosed with ASD. The Pennsylvania Department of Human Services (DHS) says it serves about 56,000 people of all ages who have intellectual disabilities or autism.
"This population is particularly vulnerable to COVID-19 for a couple of reasons," explained Kristin Ahrens, deputy secretary for the DHS Office of Developmental Programs. "Our population has a higher prevalence of some of the co-occurring diagnoses that makes someone more vulnerable to COVID-19, like hypertension and diabetes. We also serve a population that is dependent on care. So, the concepts of social or physical distancing can't be applied in the same way for someone who does require another person to assist them with certain activities."
It's a new reality for parents like Erica Daniels of Gladwyne, Montgomery County, who's been helping her 15-year-old son Leo adjust to the changes.
"Leo, like a lot of other children with autism, is very schedule and routine-oriented. So, changing his schedule has really given him more anxiety," she said. "He doesn't quite understand why things are different and why he can't go to his favorite places and why the schedule isn't the same."
Daniels said her family is handling Leo's anxiety well, but the same can’t be said for everyone, especially since the autism spectrum impacts people differently.
"Other families are really in dire straits and having full blown meltdowns and self-injurious behaviors and even having to go to the emergency room," she explained.
To help people with autism understand what’s going on, illustrations called "social stories" offer some help. Sesame Street has also come up with specific tools for families to cope with COVID-19. It’s a different type of education, as Pennsylvania schools will stay closed for the rest of the academic year.
"We really rely on a village as autism families, and we have, oftentimes, up to 10 or more professionals working with our children," Daniels said. "So, suddenly all of that has stopped."
"An autism support class is kind of hard to do online, and so, I think people are struggling on how they can get their kids to kind of cooperate with this new way of learning," added Trebat.
"We're worried about regression. We're worried about losing skills. We're worried about all the progress that we've made," Daniels said. "A lot of the time we spend is being out in the community and learning how to interact and live in the real world, and we can't do that right now."
It's an uncertain future that’s taking an emotional toll on families everywhere.
"It's hard when you have a child with autism to find the time to take care of yourself, so I think that people should try in some way though still to to find a way to take care of themselves," Trebat said. "It's like on the airplane where you have to put the oxygen mask on yourself first. I think that remembering that -- your own feelings of frustration and feeling trapped and not knowing about the future, and your grief for the things that you've lost -- those are all really valid, and the child's feelings are really valid, but that you have to take care of yourself before you can expect them to work on their handwriting or math."
As Pennsylvanians wait for the pandemic to pass, organizations like Via say they're prepared to help people on the autism spectrum.
"If suddenly these agencies are closing, and we can't provide the support, then that can be catastrophic for some of these people. So, we're trying to do our best to still be able to see people like Amanda and still help them with their routine, help them with the things they need, like grocery shopping and just getting out of the apartment and cleaning and organizing and just making sure that they have enough activities to do to keep themselves happy and keep caring for themselves," Burlew said.