How To Talk About COVID-19 With People Who Have Autism
How To Talk About COVID-19 With People Who Have Autism
Parents and caretakers of people with intellectual or developmental disabilities such as autism face unique hurtles in communicating about the coronavirus pandemic.
NOEL KING, HOST:
If you care for someone with a developmental disability that affects their communication skills - something like autism - how do you talk to them about the coronavirus pandemic? NPR's Ashley Westerman had been asking herself that question, so she called someone very close to her.
(SOUNDBITE OF PHONE LINE RINGING)
SONYA WESTERMAN: Hello.
ASHLEY WESTERMAN, BYLINE: Hi, Mom.
S WESTERMAN: Hi.
A WESTERMAN: How are things there?
S WESTERMAN: Oh, pretty well. We're staying in. We have our groceries. And we have...
A WESTERMAN: That's my mom, Sonya Westerman. I reached her at home in western Kentucky.
So have you talked to John Paul about the coronavirus outbreak yet?
S WESTERMAN: Yes, we finally did. We had to kind of let him know because there's going to be so much information out there he didn't know. And...
A WESTERMAN: John Paul is my 30-year-old brother and has autism. And while my mother is a retired teacher who has worked with people with developmental disabilities for over three decades, nothing has quite prepared her for talking to her son about a pandemic.
S WESTERMAN: I said, John Paul, there's things going on about a coronavirus. And you need to know a little bit about that because you are working, and we need you to know so that you won't hurt your grandparents.
A WESTERMAN: Our paternal grandparents are 98 and 100 - so definitely in the group of most vulnerable to COVID-19.
S WESTERMAN: And how the coronavirus could kill them but not kill him probably or Mom and Dad because we're younger and more - our bodies are stronger.
A WESTERMAN: To help explain it, she showed John a video produced by the Canadian Broadcasting Corporation. In it, a doctor explains what COVID-19 is, the symptoms and how to avoid catching it and spreading it. Mom says John Paul found the pictures and the visuals really helpful.
S WESTERMAN: And he made it very clear that if we don't help the virus spread, it will stop - and we have the power to do that. And that was a really good message to tell a person with autism or, you know, any other disability.
A WESTERMAN: Autism is a developmental disability, an umbrella category that can include both physical and mental conditions. And pediatric neurologist (ph) David Black says it varies widely.
DAVID BLACK: From people who are college professors to people that have not and will not develop the capacity to live independently. The commonality among all of that is some difficulty making sense of an aspect of the social world - so their ability to think, reason, problem-solve and execute in a social situation.
A WESTERMAN: So there's no one-size-fits-all approach when it comes to communicating. Black says to tailor messages to anyone who may need extra help understanding the situation.
BLACK: We want to think about their communication level and their cognitive level. So we have to find ways to make what we're describing appropriate, tangible for the person you're talking to. And that can be pretty tricky.
A WESTERMAN: Use plain language, suggests Peter Berns. He's the CEO of the nonprofit The Arc, which advocates for people with disabilities.
PETER BERNS: Using very simple sentence structure, very simple terms to explain the situation. We produce and other organizations produce plain-language documents that also take the language and couple it with pictures. So really, make it simple.
A WESTERMAN: And using videos, pictures and even games can be incredibly helpful. Donna Murray is with the nonprofit Autism Speaks.
DONNA MURRAY: Visual supports can sometimes help, you know, someone to feel empowered to do their part and also create kind of a - what do I do? - in a situation that feels a little unknown.
A WESTERMAN: Murray says her group has been fielding a lot of calls about disruptions in routine, like parents suddenly working from home or school closings. Those sudden changes can be particularly difficult for people with disabilities, like autism. Murray suggests trying to keep routines in place as much as possible or trying to create new ones to help provide comfort.
MURRAY: That also provides engagement. Sometimes when we're not actively engaged, it's the sort of time then to worry. And then we'll sometimes see sort of that increased irritability or maybe repetitive questions or sleep disruption, and a routine sometimes can be helpful.
A WESTERMAN: So after hearing this, I wondered, did Mom's approach work for my brother John?
What do you think about this coronavirus?
JOHN PAUL WESTERMAN: This coronavirus, you know, they make people sick.
A WESTERMAN: What are you doing to help not spread the coronavirus, John Paul?
J WESTERMAN: Well, you can't touch the face unless you have to wash your hands first.
A WESTERMAN: What else?
J WESTERMAN: Wipe anything you have with antibacterial wipe.
A WESTERMAN: Do you understand, John Paul, why it's important to do those things?
J WESTERMAN: Yeah, I do understand. I'm a little scared, that's all. But I'm calm now. Don't worry.
A WESTERMAN: Ashley Westerman, NPR News.
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