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'He's Incredibly Confused': Parenting A Child With Autism During The Pandemic

May 22, 2020
Originally published on May 22, 2020 11:12 pm

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.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

MARY LOUISE KELLY, HOST:

The pandemic has pushed many of us to our limits. There is the isolation, the need to wear protective gear, masks, gloves when making essential trips out of the house. There is working from or learning from home. Now, imagine doing all of this while living with or caring for someone with a profound disability like severe autism. Everything becomes exponentially more difficult. And that has been the case for many people who have the disorder and for those who care for them. Feda Almaliti is the mother of 15-year-old Muhammed, who has severe autism. She's also vice president of the National Council on Severe Autism. And she joins me now. Welcome.

FEDA ALMALITI: Hi, Mary Louise. How are you today?

KELLY: I am all right. And I'm glad to have you with us. I wonder if you would start by just telling us a little bit about your son.

ALMALITI: Yeah. My son, Muhammed, so he's 15. He's pretty severely impacted by his disability, by autism. 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 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. So he's incredibly confused in this time when we're all confused, but he really doesn't understand it.

KELLY: Yeah. Yeah. And I can't imagine how much it compounds things when you can't explain to him why, why all of it has changed. I mean, the rest of us are having enough trouble getting our heads around it.

ALMALITI: Yeah - wearing gloves or masks, you know, things like that, that's just not going to happen here.

KELLY: For school, for him, how does distance learning work? Does it work for someone like him with limited language and other difficulties?

ALMALITI: 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, you know, specialized teachers and staff to teach them things. We can't do that over the Internet.

KELLY: What has the impact been on you? I saw you wrote an essay. And you quoted a study from the University of Wisconsin-Madison that had found that mothers of children with autism experience levels of stress comparable to those of combat soldiers. And that is before you layer a deadly pandemic on top of things.

ALMALITI: Yeah. I mean, it's been so hard. And it's just - the stress level - it's the unknowing. We don't know what's going to happen. We don't know what'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 - the support that I get to get through it is through fellow autism parents that, you know, we have these little Zoom calls and we try to find humor in this thing that's going on every single day. You know, that we're just trying to lean on each other to get through because I can't do it alone. Nobody can.

KELLY: Of course. What about the rest of your family? How are they coping?

ALMALITI: You know, everyone's doing the best they can. I try to always look at that, you know, that they're doing the best they can every day. But, you know, I don't know how to just accurately convey. Like, it's really hard. But it's not just really hard. It's really hard because it's like, I almost felt like nobody hears us. Nobody - 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. I mean, the coronavirus is going to come and go, right? Autism is here to stay. The autism pandemic is here to stay. And we need to define, like, what our families need to get through this and going forward, like, to define what essential is.

KELLY: We'll stay with that for a second. What essential is in terms of - you're talking about...

ALMALITI: For families that have kids with autism. I mean, 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.

KELLY: What's giving you hope right now to get through this, to get your son and the rest of your family through this?

ALMALITI: Honestly, seeing the way communities have come together. I don't think in my whole life I've seen neighbors, communities banding together, asking each other how they're doing, talking more in the street. We've become so friendly, strangely (laughter). You know, I live in a city where not a lot of people just say hi. You pass by and everyone's saying hi. And everyone's smiling. And I think because we're all in this together.

KELLY: Yeah. Suddenly, everybody's going through something really hard.

ALMALITI: Yeah

KELLY: That is Feda Almaliti, a mother of 15-year-old Mu and vice president of the National Council on Severe Autism. She's been giving us a glimpse of what it is like to live through this pandemic when your child has severe autism. Thank you so much for talking with us.

ALMALITI: Thank you, Mary Louise. Transcript provided by NPR, Copyright NPR.