NPR News: ‘How To Talk About COVID-19 With People Who Have Autism’
(NPR News) 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? Ashley Westerman, reporter at NPR News discusses with her mother how she communicated with her brother, John Paul, who has autism about the coronavirus. Ashley also interviews Dr. David Black, Peter Burns, CEO of The Arc and Donna Murray with Autism Speaks about communicating with individuals with disabilities about COVID-19.
Audio recording transcript below.
NPR’s Ashley Westerman had been asking herself that question so she called someone very close to her
Sanya Westerman: Hello!
Ashley: Hi Mom!
Sanya Westerman: Hi!
Ashley: How are things there?
Sanya Westerman: All pretty well, we’re staying in. We have our groceries, and we have..
Ashley reporting: That’s my mom, Sanya Westerman. I reached her at home in Western Kentucky.
Ashley to Sanya: Have you talked to John Paul about the coronavirus outbreak yet?
Sanya 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 needed to know.
Ashley reporting: John Paul is my 30-year-old brother and he 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.
Sanya 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’re working and we need you to know so you won’t hurt your grandparents.
Ashley reporting: Our paternal grandparents are 98 and 100, so definitely in the group most vulnerable to COVID-19.
Sanya Westerman: And how the coronavirus could kill them, but not kill him probably and not mom and dad, since we’re younger and stronger.
Ashley reporting: To help explain, 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 visuals very helpful
Sanya 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. That was a really good message to tell a person with autism or any other disability
Ashley reporting: Autism is a developmental disability, an umbrella category that can include both physical and mental conditions. Pediatric neurologist David Black says it varies widely.
Dr. David Black: From people who are college professors to people who 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, The ability to think, reason, problem solve and execute when it comes to a social situation.
Ashley reporting: 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.
Dr. David 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.
Ashley reporting: Use plain language, suggests Peter Burns. He’s the CEO of the nonprofit The Arc, which advocates for people with disabilities.
Peter Burns, The Arc: Using very simple sentence structure, very simple terms to explain the situation. We produce and other organizations produce plain language documents that also take language and couple it with pictures, so really make it simple
Ashley narrating: And using videos, pictures, and even games can be incredibly helpful. Donna Murray is with the nonprofit Autism Speaks.
Donna Murray, Autism Speaks: Visual support can sometimes help someone feel empowered to do their part and also create kind of a ‘what to do I do’ in a situation that feels a little unknown.
Ashley reporting: Murray says her group has been fielding a lot of calls about disruptions in routine, like parents suddenly working from home or schools closing. 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.
Donna Murray, Autism Speaks: It also provides engagement. Sometimes when we’re not actively engaged it’s a sort of time to then worry and then we see increased irritability or maybe repetitive questions or sleep disruption and a routine can sometimes be helpful.
Ashley reporting: So after hearing this I wondered, ‘did mom’s approach work for my brother John
Ashley to John: How do you feel about this coronavirus?
John Paul Westerman: This coronavirus, you know, makes people sick.
Ashley: What are you doing to help not spread the coronavirus, John Paul?
John Paul Westernman: Well, you can’t touch your face unless you’ve washed your hands first
Ashley: What else?
John Paul Westerman: Wipe anything you have with an antibacterial wipe.
Ashley: Do you understand John Paul why it’s important to do those things?
John Paul Westerman: Yea, I do understand. I’m a little scared that’s all. But I’m calm now, don’t worry.
Ashley reporting: Ashley Westerman, NPR News.