Autism and the Impact of Pandemic Disruptions

(6:50)

with Dr. Thomas Frazier of Autism Speaks

Posted

Apr 01, 2021

The COVID-19 pandemic disrupted life for everyone, and for people with autism, the changes in routine can be life-altering.

Dr. Thomas Frazier, Chief Science Officer of Autism Speaks, joins host Tetiana Anderson to share what the transition to a post-pandemic “new normal” looks like for children and adults on the autism spectrum.

Hosted by: Tetiana Anderson Produced by: National Newsmakers Team

Anderson: The COVID-19 pandemic has disrupted all facets of daily life, and while we're all dealing with related challenges, children who thrive on regular routines are struggling. Hello and welcome to "Comcast Newsmakers." I'm Tetiana Anderson. For children on the autism spectrum routine is essential. The loss of routine and a support network at school during the pandemic is raising concern that it will result in a plateau or a decline in progress and development. And joining me to talk about all of this is Dr. Thomas Frazier. He is the chief science officer at Autism Speaks. And Dr. Frazier, thanks for joining us.

Frazier: Thanks for having me.

Anderson: So, Dr. Frazier, explain how life changing the onslaught of the coronavirus has been for people who are living with autism compared to those who aren't.

Frazier: Sure, coronavirus has been a major disruption for all of us, obviously, but for people with autism and families affected by autism, it's been a huge life change. Families are used to a specific routine to try to help their child be as successful as possible, and COVID-19 really disrupted that and made it almost impossible to keep the same kinds of routines that people had. Probably the biggest disruption was school closures, the loss of the ability to have that consistent daily routine, Monday through Friday; to be able to learn at school in the way that the child was used to. We're also seeing disruptions, though, in adults, too -- not being able to go to your specific work environment, a supported employment environment, not being able to have the same routine in your community living setting or your recreational settings. And then the other big disruption we're seeing with coronavirus and autism families is a major increase in food insecurity. So the ability to feel comfortable that you can get and access food -- we've seen 30, 40 percent increases, particularly in minority families, Black and Hispanic families, of children with autism. This is a massive increase in food insecurity and it's much larger even than we're seeing in the general population.

Anderson: And it's not just routine, it's some of the new practices that we've had to adopt because of coronavirus. Wearing a mask means something very different for a lot of people with autism. Talk about that.

Frazier: Absolutely -- wearing a mask is, you know, in the beginning, we all remember it was kind of tough for all of us, but you can imagine for people with autism who aren't used to this is a huge difference and especially individuals with autism that are more affected. They don't understand necessarily why they have to wear a mask or in what situations they have to wear a mask. So it was a very difficult teaching situation. You know, we surveyed the community, we found that roughly 20 to 30 percent of individuals with autism really struggled with wearing a mask early on. And I think some people have now adapted to it. But it's an ongoing challenge. When do I have to wear it? Why don't I have to wear it now? Why do I have to wear it in this situation? So, you know, this is a huge thing that people with autism have to deal with it. A lot of us don't think about it anymore.

Anderson: And because of coronavirus, we've all been cooped up very closely with one another for some time, and this means that parents are getting to observe their children, perhaps in ways that they haven't before. What does this mean when it comes to screening and diagnoses of autism? Has that changed things at all?

Frazier: Absolutely -- so, you know, when coronavirus first hit, a lot of the diagnostic clinics shut down and even screening for autism was very delayed or didn't happen at all in some places. And so what we expect to have happen is to see, as we start to come out of the pandemic and we start to see more in-person evaluation, we expect that there's going to be a huge, huge pent-up need for evaluations. And so we expect that there's going to be a lot of people diagnosed over the next couple of years because of the fact that they weren't able to access good evaluations for a while. And approximately two percent of the population has an autism spectrum disorder diagnosis. And yet over the last year, 12, 13 months, we're not seeing as many people diagnosed, and that's just because of clinics not being open and available. So we expect there's going to be a real pent-up demand for these evaluations. And then, of course, many people are going to be diagnosed and then there's going to be a pent up demand for services. And so as we come out of the pandemic, this is going to be a major challenge we're going to have to address.

Anderson: Yeah, I wanted you to talk about that. As we do come out of the pandemic, that's going to mean that getting these people back on track is going to sort of be its own challenge. What do you look to in the future when it comes to treatments, routine, returning folks with autism to the routines that they had before? Is that even possible?

Frazier: Well, we're going to have to do the best we can, right, so I mean, for many children with autism, their primary intervention setting is their school. And we know that many children with autism are not benefiting from their educational setting right now because of the coronavirus. So when we come out of the coronavirus, we're probably going to need to see a lot of compensatory services in schools, maybe even during the summertime, maybe extra hours provided to try to help catch them up, Intervention-wise. You know, children with autism continue to have individualized education plans, and those IEPs need to continue to be addressed and those goals need to be met. So a lot of additional intervention services, compensatory services. We encourage a lot of families to look at whether or not there are options outside of school as well to try to help children catch up, whether they can use insurance or community services, talk to their county boards of developmental disability to try to find different ways that they can get the intervention that the child needs to make up for all this lost time.

Anderson: And Dr. Frazier, if people want to know more about your work, about autism itself, where can they go? What's your website?

Frazier: They can go to autismspeaks.org. There's a ton of free resources there. They can also call the Autism Response Team -- 888-AUTISM2, and get the kind of help that they need.

Anderson: Dr. Thomas Frazier, thank you so much for being here.

Frazier: Thanks for having me.

Anderson: And thanks to our viewers as well -- for more great conversations with leaders in your own community and across the country, be sure to log on to comcastnewsmakers.com. I'm Tetiana Anderson.

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