Children and young adults with autism are confused and missing out on vital resources right now due to the COVID-19 pandemic.
“There aren’t enough answers to the questions, and that is frustrating and can be frightening,” said Neal Lichter, program director for Pathfinders for Autism and father to a 15 year old on the spectrum. Pathfinders for Autism supports individuals affected by autism through individualized programs and resources, training, information, and activities free of charge.
Lori Kolle, director of Jewish Social Service Agency Outpatient Mental Health Services, is mother to Levi Kolle, 20. She has been planning her son’s day minute by minute, making sure he knows exactly what to do and at exactly what time. Those with autism do “much better with a fixed schedule,” shes said. “They need to know what to expect, they need attention. So having this unstructured time is very difficult for us.”
Theodore Casser is father to Ethan Casser, 12, who is on the spectrum. For the Cassers, a schedule was key to providing some stability, too.
Kolle said “pretty much all resources” are less available now. While schools and therapists offer online help, it’s not a great substitution. Her son is less engaged with a screen.
“For my son, it’s very agitating and hard for him to concentrate,” Kolle said.
While there are online classes such as flower-making art classes or Zumba, her son is not interested, and she is left with more responsibilities.
“Parents are being relied on to teach and tutor their children, and that can be extremely difficult when every child with autism is impacted differently and learns in a unique way,” Lichter said.
Another challenge for children with autism is the lack of socialization.
“He does miss seeing the people we’d normally see during the day,” Casser said of his son. “The couple of opportunities he has to see school friends and teachers over Zoom doesn’t really fill the gap.”
Casser is concerned the lockdown may continue into the summer. “Ethan has been a camper at J Day for a long time, and it’s one of those situations where he really shines socially,” he said. “This was also the summer we were looking at sending him to sleep-away camp for the first time for two weeks, and he was very excited about the chance to go.”
Some people on the spectrum, though, are not as social.
“Depending on where you are on the spectrum, they may not have friends, but they do go in groups and are with each other,” Kolle explained.
Her son doesn’t mind being with just his family, but Kolle knows that for others, their kids want to get outside and do activities.
Some students also face the obstacle of not having a diagnosis, which during this time, where schoolwork is more independent, can add an additional challenge.
Perhaps the most concerning impact of quarantine on children and young adults with autism is the possibility of skill regression.
Lichter noted he has seen this challenge come up frequently in other families recently.
Kolle explained that those in speech classes, occupational therapy, or gym classes, who don’t do well with online classes, may lose some momentum in their progress.
Casser has seen this problem.
“We have been noticing some regression in little ways from the disruptions to his normal daily life,” said Casser, such as “more dependency for prompting for things he’d normally handle himself at school. But the real proof about any regression will have come after we’re back to a situation that’s closer to what passes for normal in our lives.”
Thankfully for Kolle, “it’s starting to feel a little bit less intense” as her family approaches week four of quarantine. Her son has stopped waiting for the bus to go to school. He has also stopped asking for his lunchbox, vocalizing his confusion, and getting agitated. “They’re getting a little bit more used to the abnormalities.”
The greatest advice Kolle can give is to have the most detailed schedule as possible.
Lichter’s advice is to take care of yourself.
“Breathe,” he said. “You can’t take care of your own family or loved ones if you can’t take care of yourself. You aren’t expected to turn into an [expert] overnight. Accept that there is going to be frustration and anxiety, as difficult as that can be to deal with. Find learning and teaching moments where you can, and celebrate successes, no matter what size. Baby steps are still steps forward.”