Living with pandemics has been difficult for everyone: isolation, the need to wear protective gear such as masks and gloves, adjusting to work or studying from home.
For those living or caring for someone with severe autism, those challenges can be more difficult.
“Wearing gloves or masks, you know, things like that? That just doesn’t happen here,” said Feda Almaliti.
Almaliti is the mother of 15-year-old Muhammed, who has autism. He is also vice president of the National Council on Severe Autism.
In an emotional interview with NPR, she described the toll on the current crisis that is happening to her family and others like her.
“Muhammed is a lively, loving boy who doesn’t understand what’s going on right now. He doesn’t understand why he can’t study. And school is one of his favorite places to go. He doesn’t understand why not. he could walk to the mall if that was one of the favorite things to do. He didn’t know why he couldn’t go to the park, why he couldn’t go to the grocery store, “Almaliti says. “So he was incredibly confused, at this time when we were all confused, but he didn’t really understand it.”
Here are excerpts from the interview.
How does learning distance work for your son, with limited language and other difficulties?
It didn’t work for him. And I don’t think it works for a lot of kids like him. Our children need highly structured, one-on-one, skilled teachers and staff to teach them. We can’t do that on the Internet.
You write an essay and quoted a study from the University of Wisconsin-Madison that found that mothers of children with autism experience levels of stress comparable to combat soldiers. And before you layer a deadly pandemic on top of things.
This is the unknown. … We don’t know when it will end. We do not know what is going on, and to deal with autism at home makes it even more difficult. The only support I can get is from fellow parents with autism. We do have Zoom calls, and we try to find humor in the matter. … We’re just trying to get everyone to come. Because I can’t do it alone. No one can do it.
What about the rest of your family? How did they cope?
They do their best every day. … But I don’t know how to accurately convey, it’s really difficult. … It’s really hard because I almost feel like no one is listening to us. Because my son doesn’t really talk. He doesn’t talk. And I must be his voice. And nobody listens to what’s going on for our families. You know, nobody gets that we’re just as weak as coronavirus people. The coronavirus will come and go. Autism is here to stay. …
We need a lot of help to achieve this. And I firmly believe that the support for autism workers, helpers, their teachers and caregivers is important to nurses and doctors and should be given the same accommodation. People do not realize that for our families, caregivers are our first response. Special schools in need are our hospitals. Our teachers are our fans. And we can’t do it without them.
Listen to the entire audio link interview above.