Rob Steele, MD (Host): Welcome to Pediatrics in Practice, a CME podcast. I'm your host, Dr. Rob Steele, Executive Vice President and Chief Strategy and Innovation Officer at Children's Mercy, Kansas City. Before we introduce our guest, I wanted to remind you to claim your CME credits after listening to today's episode. You can do so by visiting cmkc.link/cmepodcast and click Claim CME, the little button there on the, on the screen.

Today, we are joined by Dr. Cy Nadler to talk about autism and access to care. Dr. Nadler is the Barnes Carlson Endowed Professor and Section Chief for Autism Psychology at Children's Mercy Kansas City, as well as a Professor of Pediatrics for the UMKC School of Medicine. His research and clinical work is focused on increasing access to care for youth with neurodevelopmental disabilities and their families, along with the health and behavioral outcomes of these populations. Dr. Nadler is an elected member of the Board of Directors for the Society for Developmental and Behavioral Pediatrics, and an appointed member of the Missouri Autism Commission. His work is funded by the Centers for Disease Control, Maternal Child Health Bureau, the PCORI, and other sources. Thank you for joining us, Dr. Nadler.

Cy Nadler, MD (Guest): It's my pleasure to be here.

Host: So, uh, before we begin, I have to ask, you're heading to Maine to visit Acadia, right? So you're a big national parks kind of guy. I'm not going to ask you what your favorite one is. Cause that's like, trying to choose between your children type of thing. So let me ask you this. I assume that you have also visited state parks, which have kind of a different flavor. So if you think about your great experiences on the national side or the state parks. Which direction do you go?

Cy Nadler, MD (Guest): Well, you know, living here in Kansas City uh, state parks are certainly more accessible. I'll say that. But we're privileged. We get to do a little bit of travel and I don't know, we've had some just really fun and unexpected experiences. You know, I had never imagined, Joshua Tree, you know, which is outside of Palm Springs, you it's like being on Mars or something like that.

And so just really, really cool experiences out in the wilderness.

Host: Oh that's great. Yeah. That one's on my bucket list. I still haven't made it there. I've gotten close, but I never went in. So that's wonderful. I'm, I am a big state park fan myself. It kind of depends on the state and how well they're doing it, but, a lot of the state parks are just as good, so, but we digress.

Why don't we jump into your work. Talk to us a little bit about the risk factors for patients with autism and how they may differ from neurotypical patients.

Cy Nadler, MD (Guest): Yeah, I think most pediatricians are well aware that, you've seen one kid with autism, that means you've seen just one kid with autism. There's such heterogeneity in this population. But one of the things I try to drive home, especially when I'm talking to med students and trainees, is that, a unifying factor is increased risk for just about everything, frankly.

I mean, when we're talking about physical health conditions, higher rates of sleep disorders, GI problems, seizure disorders, just about everything you can imagine in terms of a subspecialty. You're just more likely to encounter kids and frankly adults on the spectrum too. And same is true on the mental health side too. We've got just much, much higher rates of ADHD, anxiety, even things like suicidality and depression.

Host: Yeah, you know, as a general pediatrician, you have those times where you have a child that you suspect may be have autism, you're debating, do you refer this patient, do you not refer this patient? And, that really comes down to all those factors that you have to utilize in trying to diagnose.

But from what I'm hearing you say is that regardless of where they are kind of on that spectrum, the risk factors that you just mentioned are the same. Is that fair?

Cy Nadler, MD (Guest): It's true. And there are, I would say even sort of multiplicative, risks because, when that autism diagnosis lands in the chart, there's a real chance that folks only see that diagnosis and they stop thinking about other things. They stop thinking about co occurring mental health conditions because, oh, that's just the autism talking.

Well, no, it could be a lot of other things too. We have time and time again heard from families, we knew something was up, this kid looks like they're in pain, they can't communicate, we asked and asked and had to press and press to get more tests. And then sure enough, oh yeah, they have a gallstone.

Or sure enough, there's a real legitimate issue that on the surface, oh, it's just behavioral, and that diagnostic overshadowing really contributes to those long term health outcomes that we see that are so much worse.

Host: Very good. A lot of our listeners are general pediatricians who may or may not be aware of the Supporting Access For Everyone Consensus Statement. Could you tell us a little bit about that and the work that's being done to ensure appropriate support for youth with neurodevelopmental disabilities?

Cy Nadler, MD (Guest): Yeah, so, because of this higher medical risk especially, we want these kids to be seen early and often. We want them to get all the preventative care. We want them to get all the treatments that they should. But when we look at the healthcare and public health data, they're just much more, likely to miss appointments, not have procedures done or have them delayed repeatedly, which of course just magnifies the risk for bad health outcomes.

And so we, we formed a collaborative through the Developmental Behavioral Pediatrics Research Network and a group called the American University Centers on Disability, AUCD, and put together what is really an interesting group of folks from every discipline you can imagine. So of course we had pediatrics heavily represented, but psychiatry, neurology plus all of our allied health colleagues.

So occupational therapy, child life, nursing, healthcare administration, psychology, behavior analysis. Plus, parents of kids on the spectrum, adult self advocates on the spectrum, and that panel, you know, with all their lived and professional experiences, vetted the literature and conducted a live like open forum with national testimony.

And what we did is we consolidated that into a consensus statement on what healthcare should actually look like and sort of chart a course for how institutions and even clinics and individual providers can do a better job delivering care to these kids.

Host: Yeah, that's wonderful. That kind of resource, I am certain is so important, particularly for those pediatricians in the community and with respect to how it is they can best take care of their patients like that. One of the things I'm sure you get feedback on this all the time, not just locally, regionally, or nationally, and that is just access to care, access to autism care, which is a challenge everywhere I've ever been, right?

 So, I think that's well understood, that access to autism care is a challenge. I don't know that everyone understands why that is. Could you give us a sense of just the factors that impact the challenge of access to care?

Cy Nadler, MD (Guest): Yeah, maybe I'll categorize these in terms of like individual level factors and then maybe the system stuff because, you know, for an individual kid, an individual family, getting into the clinic is a challenge. That's an access issue right there. You know, If this kid isn't safe to travel, if, they're unbuckling their seatbelt, if they're going to have a major meltdown anytime they set foot in the hospital or worse, run off.

And we, have this on our radar all the time, even right here to make sure kids are safe while they're here. That prevents their access to care. And, I think it's our job as institutions and as clinicians to be real about that and think, okay, how can we make that journey to our clinic safer?

How can we make our setting safer for you to actually physically be in? But then there's all these systemic barriers, right? Because what payer is going to let you have an hour long visit in primary care with that kid to make sure it goes well? You know, administrators going to say, yeah, why don't we reserve all those great first thing in the morning slots for these kids that are going to have a higher no show rate because of those access issues?

And so we need structures and payment models that are going to facilitate that higher level of care that these kids need. And, just the bigger access issues across the board. So workforce is the other big one, right? So there are just not enough psychiatrists, developmental pediatricians, even psychologists to do the diagnostic evaluations that are just critical to get kids into these systems.

And then, unfortunately, our mental health payment models are fractured at best. We could spend a whole hour talking about mental health parity and yeah, the parity issues especially affect kids with disabilities because again, that higher utilization, right? And it means that some payers are trying to cap their amounts of care for services that are truly habilitative, meaning they need the support to continue to develop versus fixing a problem.

You know, we're stuck in a medical model trying to fix and cure diseases when autism is a lifelong developmental difference, right, that is going to require support across a lifetime.

Host: Yeah. Well, that's well stated. The impact that has on the individual family who's trying to access that care is tremendous. Tell me what are the things that you and your practice, that Children's Mercy Kansas City is doing to try to mitigate some of those access issues? And I'm sure you probably know the, your colleagues across the nation, maybe that some of the creative things that they may be doing to improve access.

Cy Nadler, MD (Guest): Yeah. So right here at Children's Mercy, we are so lucky to have started our investment in increasing access to real expert supports to meet these kids where they are, particularly on the inpatient side. So, we have a really robust psychology consult service, but over the last few years, we've augmented that with professionals who are behavior analysts.

They're literally trained and they are there to help support behavior in the inpatient units in a way that psychology, typically, and even other specialties like Child Life or OT may not always have all the answers to. And so creating that professional level along with these other team members gives us a lot of flexibility.

It lets us negotiate, what exactly this kid is going to need to be able to communicate their needs on the floor, to be able to have the things kids need; like recreation, that's going to decrease problem behavior, access to preferred activities, basic sensory accommodations that are just going to make everyone safer, frankly the kid and the staff, it's going to make it easier to change the dressings on that wound. It's going to make it easier to get those blood draws if we do that proactively and in cooperation and collaboration with the family and the child too. So I'm real proud that we're doing that.

Host: Yeah, no, I think that's fantastic.

Cy Nadler, MD (Guest): The other big thing I'd add is because of those workforce issues I mentioned we've really doubled down in terms of our thinking about how do we stimulate interest in not just specializing in developmental disabilities, but also intriguing our colleagues going into other specialties in primary care that they should be excited about this too, because they're going to see these kids and adults regardless of whether they plan to.

And so we are a part of a network focused on embedding developmental medicine education into medical schools. And so for the last just about five years, we are one of the few schools where instead of getting zero hours of education in med school, our UMKC School of Medicine students are getting great initial exposure to just the world of developmental medicine education and understanding some of the pitfalls that they might fall into, some of the things that they can do to help these patients.

Host: Boy, that's really great. And I would venture to say it's somewhat innovative because now it's been a day or two since I uh, graduated med school, but I'm one of those zero education folks, you know, I, thankfully actually got fair amount in residency, which I'm going to presume there is at least some exposure for most of the pediatric residents. But being very intentional to build that pipeline is fantastic and I applaud you for moving forward on that. That's fantastic.

Cy Nadler, MD (Guest): I appreciate it. And you know, I think you're right. Practicing pediatricians realize they need the knowledge. They often reach out to us and say, Hey, you know, we need to brush up on this. We're seeing all these kids, but when they're in training, they don't necessarily realize that that's the need. And so our hope is we can sensitize them early in their careers.

You know, We have this six year BA MD program. And so these are folks really at the beginning of their journey. And if we can convince them not to run for the hills when they see a, an autism diagnosis in the chart to actually lean into that; then that's going to be good for a lifetime.

Host: Yeah, great. You know, along those lines, do you have any words of wisdom, any, pearls that you can pass on to the pediatricians about how best to support the family and patient with a neurodevelopmental disability?

Cy Nadler, MD (Guest): Yeah. We're on the specialty side. And so we depend on our frontline colleagues in primary care to reach out when they need us, frankly, and I wish we all had more time to do that. And one of the things I think when I've spoken with primary care doctors, especially they feel this burden of is, I feel like I have to have all the answers.

I feel like I have to know everything. And I would say the good news is you don't. All you need to do is figure out, what center is within a few hours of you, because odds are, there's a navigator attached to that center that does have all the answers. When I'm stuck in clinic, I phone a friend to our navigators, all the time because they know family resource, every support group, they know there's this one OT that practices in rural Kansas that they've connected to before and they're the oracles. And so connecting to that person versus trying to know all of it is probably the best advice I could give.

Host: That is fantastic. And I love the uh, moniker of they are the oracles. They are they are absolutely invaluable. So yeah, great advice. Well, Dr. Nadler, we really appreciate you joining us today. Before I let you go, I have to ask, you know, as you're making your way to Acadia or any of the other national parks are you a camper? Or are you a glamper when it comes to your visits?

Cy Nadler, MD (Guest): Done a little bit of both but I'm excited to say actually in about a month, we're going to go camping for the first time with our one year old. And so hope everyone out there will wish us luck.

Host: Yes, I applaud you. That's, well done. That's taking it on. That's fantastic. Well, as a reminder, claim your CME credit for listening to our show today. Visit cmkc.link/CMEpodcasts and click the claim CME button. This has been another episode of Pediatrics in Practice, a CME podcast. See you next time.