Living with the pandemic has been difficult for everyone: the isolation, the need to wear protective gear like masks and gloves, the adjustment to working or learning from home.
For those living with or caring for someone with severe autism, those challenges can be exponentially more difficult.
"Wearing gloves or masks, you know, things like that? That's just not going to happen here," says Feda Almaliti.
Almaliti is the mother of 15-year-old Muhammed, 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 her family and others like hers.
"Muhammed is an energetic, loving boy who doesn't understand what's going on right now. He doesn't understand why he can't go to school. And school is one of his favorite places to go. He doesn't understand why he can't go take a walk in the mall when that was one 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 learning work for your son, who has limited language and other difficulties?
It does not work for him. And I don't think it works for a lot of kids like him. Our kids need highly structured, one-to-one, specialized teachers and staff to teach them. We can't do that over the Internet.
You wrote an essay and quoted a study from the University of Wisconsin-Madison that found that mothers of children with autism experience stress levels comparable to those of combat soldiers. And that is before you layer a deadly pandemic on top of things.
It's the unknowing. ... We don't know when it's going to end. We don't know what's going on, and to deal with autism at home makes it even harder. The only support that I get to get through it is through fellow autism parents. We have Zoom calls, and we try to find humor in this thing. ... We're just trying to lean on each other to get through. Because I can't do it alone. Nobody can.
What about the rest of your family? How are they coping?
They're doing the best they can every day. ... But I don't know how to accurately convey, it's really hard. ... It's really hard because I almost feel like nobody hears us. Because my son doesn't really talk. He doesn't talk. And I'm supposed to be his voice. And no one's listening to what's going on for our families. You know, no one gets that we are just as vulnerable as coronavirus people. The coronavirus is going to come and go. Autism is here to stay. ...
We desperately need extra help to get through this. And I firmly believe that autism support workers, aides, their teachers and caregivers are as essential as nurses and doctors and should be given the same accommodations. People don't understand that for our families, caregivers are our first responders. Special needs schools are our hospitals. Our teachers are our ventilators. And we can't do this without them.
Listen to the full interview at the audio link above.
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