Rise in autism prevalence highlights continued need for early intervention

Contemporary Pediatrics®:

Hello and thank you for joining us. I'm Joshua Fitch, editor with Contemporary Pediatrics®.

J. Thomas Megerian, MD, PhD, FAAP:

Hi, I'm Tom Megerian, Joshua. I am Clinical Director at the Thompson Center for Autism and Neurodevelopmental Disorders at Children's Health of Orange County (CHOC) and work as a lead of that organization for the the the center as well as a Division Chief for the Division of Neurodevelopmental Medicine at CHOC as well.

Contemporary Pediatrics®:

Today we're discussing autism prevalence and children. recent findings from the CDC has Morbidity and Mortality Weekly Report suggests approximately 1 in 36 us children aged 8 years were identified with autism spectrum disorder in 2020, higher than the 2018 estimated average. First, what trends are you observing regarding prevalence of autism and children, and are there any associations with early detection disruptions potentially resulting from the COVID-19 pandemic or otherwise that may be contributing to an increase?

Megerian:

Yes, thanks, Joshua. It's a great question. You know, it's really hard to say if we're getting, say, a bolus of more kids that just weren't being diagnosed in the last two plus years, because of reluctance to come in to tertiary care centers like ours to receive the diagnosis, we know that there was a drop off in the number of kids that were being seen and referred. We've seen that in terms of vaccinations, that number dropped. We've seen it in terms of I think, well, health care visits, and so that's definitely a possibility. The counter argument to that, though, would be that this trend, increasing trend has been going on that we see every 2 to 4 years that we monitor that's been going on for a while. And if you look at the numbers, like over the last 5 years, it was one in 56, then one in 44. Now one in 36. And so those numbers, that trend of increasing, you know, by about 10, one in 10, every two to four years that's been going on. So it's a tough question to answer. Are we seeing this increase right now? That would have maybe flattened off from the 144, because we just didn't see a number of kids early? Or is this just a continuation of the trend we saw before? Hard to answer, and I think time will tell.

Contemporary Pediatrics®:

Certainly. And on that point, my next question is what kind of research needs to be completed on a national scale to kind of get a better idea to maybe differentiate some of those timing factors you just mentioned?

Megerian:

I think continuing the research we're doing we do have, I think it's 11 or 12 monitoring sites in the monitoring network, the disabilities monitoring network. I know that there's opportunities, it sites can sign on to be a monitoring site network, we're considering doing that ourselves here. And I think having more of those, right now they are distributed across the country. So there's west coast, there's Midwest, there's east coast, I think adding more sites like, like the ones that are already in the developmental disabilities monitoring network, would be probably the best thing we can do, because those sites are already set up. And they do show really significant differences depending on the location, they have numbers that are much lower than one in 36 in certain areas of the country, and numbers that are much higher than one in 36 and other areas. So there's definitely a difference depending on the state. So having more surveillance locations within each state would be a great idea. Ideally, it would be phenomenal if every state would have one of those centers that that does surveillance monitoring for for the prevalence that would contribute to the national database.

Contemporary Pediatrics®:

Obviously this upward trend in prevalence isn't something healthcare professionals want to see what is the reaction? What are next steps when findings such as these are presented? With this increased prevalence and austism. When these results are released? What is the reaction? What are some of the next steps healthcare professionals take?

Megerian:

I think it reminds them to be vigilant to continue monitoring. I know that here in in Orange County, Population Health Program at Children's Hospital of Orange County has been very good about encouraging the providers in network to really be vigilant about their monitoring and doing screenings, and so those numbers have gone up dramatically. The number of percentage of pediatricians doing screening has really gone from below 50% to well above I think at last I heard is upwards of 70% or more of practices are doing routine screening that is structured screening programs, not just kind of asking how are things going, but actually administering a structured screening tool. And that's really what we need to see, we need to get that number across the country up to 100%.

Contemporary Pediatrics®:

You mentioned the screenings, what are some of the immediate benefits of earlier diagnosis and treatment for children at risk of behavioral health conditions,

Megerian:

Early intervention, that's really the number one, the number one intervention that we have that's effective has been proven time and time again to be early intervention. Be it speech for kids with speech delay, be it occupational therapy for kids with fine motor delay, physical therapy for kids with more gross motor delays, and then applied behavior analysis for the children who've got autism. Although even ABA, applied behavior analysis is now being used for other conditions besides autism, and has been shown to be effective as well. And getting those programs started as early as possible during the developmental window of neuroplasticity is so critical. The older a child is before they start receiving services, the more difficult it is for those services, or those therapies to be effective. They're still effective, so I don't want anyone to get the impression we shouldn't start therapies if the child is older. But we do know that because of the developmental windows, we can do better the earlier we start, and we we know that we've had that information for years. So starting as early as possible, is the number one improvement we can make in society to help kids maximize whatever potential they have.

Contemporary Pediatrics®:

Certainly that early screening process sounds like it's top priority. What are some other ways then parents, healthcare professionals, even caregivers, can address autistic traits kind of before they begin to manifest further as a disorder.

Megerian:

You know, if you see a child, who has some traits of autism, not taking the watchful waiting approach is probably the best thing that we could do. There was there was always this tendency to say, well, let's see what happens. I see I see what you're talking about. Eye contact isn't great in your child. But let's just see if that's just, you know, a, an incidental finding that is really not going to be present in a year from now we'll just watch it. I think that's probably one of the lessons we've we've learned over the last several years is not to do that. And to really be more aggressive. Using some of the new tools that are out there, there are a number of new tools that are out for the primary care physician, especially in the AI field that can help with getting early diagnosis. There's also there are structured types of play up observations there's so I mentioned, artificial intelligence tools, there's a number of those that are out there that can help pediatricians really take a more proactive approach to saying, Does this child meet criteria for autism now? Or should I watch and see what happens?

Contemporary Pediatrics®:

Certainly, and thank you very much. Is there anything else you'd like to add or comment regarding prevalence for this patient population, what you hope to see going forward or frankly, what you think needs to happen going forward?

Megerian:

I think putting diagnosis in the hands of primary care pediatricians and not having to have them refer to tertiary care centers for everybody is probably the number one thing we can do. And I think we need to address the insurance issues around that. Making sure that pediatricians are entitled and able to make a diagnosis and have payers cover both the diagnosis that pediatricians do and also approve referrals for therapies based on those diagnosis we do you see a lot of pushback, where payers will tell a pediatrician, no, you need to send this child for a further evaluation, or you need to do one of these very specified tests to make a diagnosis, you can't make the diagnosis using you know, one of the new tools that are out there. It's these three or four tools that we like you to use, and if you don't use them, we want to prove the referrals. I think that's a big mistake. I think pediatricians are trained to make these diagnosis, and there are tools out there, as I mentioned, that can help them make the diagnosis and help them feel more confident, and I don't think we need to have every child referred to a tertiary care center. We have waitlists that are I know if some centers three years to get an evaluation, you can't wait three years to refer a kid for therapy. It's like you said what can we do? What's the immediate approach that pediatricians can take when they have a suspicion for autism? If a child has to wait three years for them to get a, quote, "official diagnosis" is a tertiary center that's that's just that puts them outside that development the window where therapies can be most effective.