Living with the pandemic has been difficult for everyone: the isolation, the need to wear protective equipment such as masks and gloves, the adaptation to work or learning from home.
For those living with or caring for someone with severe autism, these challenges can be exponentially more difficult.
“Wearing gloves or masks, you know, things like that? It just won’t happen here,” says Feda Almaliti.
Almaliti is the mother of 15-year-old Muhammad, who has severe autism. She is also Vice President of the National Council on Severe Autism.
In an emotional interview with NPR, she describes the toll the current crisis is taking on the family and others like her.
“Mohammed is an energetic, loving boy who does not understand what is happening right now. He does not understand why he can not go to school. And the school is one of his favorite places. He does not understand why he can not take a walk in the mall when it was one of his favorite things to do. He doesn’t know why he can’t go to the park, why he can’t go down to the grocery store, “Almaliti says. “So he’s incredibly confused, in this time when we’re all confused, but he really doesn’t understand it.”
Here are excerpts from the interview.
How does distance education work for your son, who has limited languages and other difficulties?
It doesn’t work for him. And I don’t think it works for many kids like him. Our children need very structured, one-on-one, specialized teachers and staff to teach them. We can’t do that over the Internet.
You wrote an essay and cited a University of Wisconsin-Madison study that found that mothers of children with autism experience levels of tension comparable to those of combat soldiers. And that’s before you put a deadly pandemic on top of things.
That is the ignorance. … We do not know when it will end. We don’t know what’s going on, and dealing with autism at home makes it even more difficult. The only support I get to get through it is through parents of autism. We have Zoom conversations, and we try to find humor in this matter. … We’re just trying to lean on each other to get through. Because I can’t do it alone. Nobody can.
How about the rest of your family? How do they do?
They do the best they can every day. … But I don’t know how to convey exactly, it’s really hard. … It’s really hard because I almost feel like no one hears us. For my son does not really speak. He doesn’t talk. And I’ll be his voice. And no one listens to what’s going on for our families. You know, nobody gets that we are as vulnerable as people in coronavirus. Coronavirus will go and go. Autism is here to stop. …
We desperately need extra help to get through this. And I am convinced that autism support for workers, assistants, their teachers and caregivers is just as important as nurses and doctors and should be given the same accommodation. People do not understand that caregivers are our first responders to our families. Special schools are our hospitals. Our teachers are our fans. And we cannot do this without them.
Listen to the entire interview on the audio link above.