Autism Annex: The STAR Autism Support Podcast

Developmental Behavioral Pediatrics with Dr. Randall Phelps

May 06, 2024 STAR Autism Support
Developmental Behavioral Pediatrics with Dr. Randall Phelps
Autism Annex: The STAR Autism Support Podcast
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Autism Annex: The STAR Autism Support Podcast
Developmental Behavioral Pediatrics with Dr. Randall Phelps
May 06, 2024
STAR Autism Support

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Randall Phelps, M.D., Ph.D., is the director of the Fellowship in Developmental Behavioral Pediatrics at Oregon Health & Science University.  An expert in assessing and caring for children with developmental disabilities, Dr. Phelps discusses autism, the diagnoses process, and the importance of time with patients.

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Randall Phelps, M.D., Ph.D., is the director of the Fellowship in Developmental Behavioral Pediatrics at Oregon Health & Science University.  An expert in assessing and caring for children with developmental disabilities, Dr. Phelps discusses autism, the diagnoses process, and the importance of time with patients.

00:00:01 Johnandrew Slominski 

Hi everyone, welcome to this episode of the Autism Annex Podcast, brought to you by Star Autism Support. I'm your host, Johnandrew Slominski. 

00:00:13 Johnandrew Slominski 

If you're a regular listener to the podcast, you'll have heard many of my guests share their unique stories of the autism diagnosis process, as well as the road to finding services for those who need them most. 

00:00:27 Johnandrew Slominski 

With that in mind, let's consider 2 revealing big picture statistics. 

00:00:34 Johnandrew Slominski 

First, a CDC report from 2021 found that in the US, the number of children diagnosed with Autism Spectrum Disorder skyrocketed from one in 150 in 2002 to one in 54 in 2016. Second, the report found some significant and very impactful gaps. By age 8, 30% of children in the study who met the criteria for autism still did not have a formal diagnosis. 

00:01:08 Johnandrew Slominski 

Enter my guest, developmental behavioral pediatrician, Dr. Randall Phelps. Dr. Phelps, you've dedicated your career to serving children and to closing these very gaps, could you give us a glimpse into the world of Developmental Behavioral Pediatrics? 

00:01:26 Dr. Randall Phelps 

Sure. So, I'm Randall Phelps, I'm a developmental behavioral pediatrician. I've been working as a developmental behavioral pediatrician at the Child Development Rehabilitation Center, which is part of Oregon Health and Science University for the last 16 1/2 years. A developmental behavioral pediatrician does medical school, then pediatric residency, and then a three-year fellowship in developmental behavioral pediatrics. There aren't enough of us. We focus on providing diagnostic services, but also ongoing care guidance, counseling and support to children, youth and families with developmental and behavioral conditions or in questions and in pediatrics, most of pediatrics is developmental and behavioral. So, given that, there's tremendous need for expertise in this area and there are very few developmental behavioral pediatricians to serve America's children and youth. 

00:02:30 Johnandrew Slominski 

Now when you say that there are very few, how many are we talking about here? 

00:02:35 Dr. Randall Phelps 

There's fewer than 1000 in the country. 

00:02:41 Johnandrew Slominski 

Side note, after my conversation with Dr. Phelps, I went back to the CDC. Their latest count is just 758 developmental behavioral pediatricians in the US. That's 758. 

00:03:00 Johnandrew Slominski 

To put that number into perspective, there are roughly 74.6 million children in the United States, which boils down to about one doctor for every 98,000 kids. 

00:03:16 Johnandrew Slominski 

So, Dr. Phelps, you saw this issue and you've taken action here in the state of Oregon. 

00:03:23 Dr. Randall Phelps 

Yes, yeah. Nine years ago, I started a fellowship in Developmental Behavioral Pediatrics, Oregon's first and only fellowship to train and retain developmental behavioral pediatricians in this state. And I enjoy that very much. I enjoy teaching. It keeps me fresh and I and also it's an opportunity to get more kids seen, but also in the in the meantime for me, I enjoy it. It's very personally satisfying to teach and teach folks about things that I've learned from practice and from my own mentors. 

00:03:55 Johnandrew Slominski 

So, you started this very important fellowship and I want to ask you more about that. But to back up for a moment, walk us through some of the factors that have gotten us to where we are now. 

00:04:08 Dr. Randall Phelps 

I think there are a lot of factors that contribute. One problem is that children don't vote, and if you look at Oregon's budget, the children's behavioral health services are a very tiny part of Oregon's health budget and a very tiny part of the overall Oregon budget, for example. So we're just not investing enough in children in children's education and children's behavioral health, children's physical health. So that's part, that's one contribution. 

00:04:35 Dr. Randall Phelps 

The other is, we've correctly identified the importance of increasing, you know, specifically to this topic of autism. We've identified the importance of increasing autism awareness. We I think have gotten the message across quite effectively that primary care providers need to be screening for autism and referring folks. 

00:04:55 Dr. Randall Phelps 

So that's a that's a public health success, but when you increase screening and you increase referral, you need to be thinking about what happens next, which is what do you do with these referrals, who's going to handle them? 

00:05:07 Johnandrew Slominski 

So, we know that developmental behavioral pediatricians are clearly overloaded. And yet you started the first and only fellowship for the specialty in the state of Oregon. 

In a word, how? 

00:05:22 Dr. Randall Phelps 

Because I saw the need. We have a wait list of over a year for people to get diagnostic assessments. That's completely unacceptable. Now that the fellowship exists, I'm starting to get some support, which is very gratifying. 

00:05:35 Johnandrew Slominski 

And it sounds like in many cases, the legislation and funding are trailing far behind the need right, even though experts practically predicted this very situation. 

00:05:47 Dr. Randall Phelps 

So, for people like Lorna Wing who wrote, she's the author of the in the Diagnostic and Statistical Manual Version 4, she wrote the Asperger disorder label and the pervasive developmental disorder not otherwise specified labels. She was a physician and a mother of a child with autism, and she correctly identified that we needed to broaden our understanding of the autism spectrum and pick up kids with milder forms of autism to get them into early intervention and to help improve their communication and social skills and improve their satisfaction with their lives and their success. 

00:06:31 Dr. Randall Phelps 

She also anticipated that when we do this, if you lose some diagnostic criteria, so if you imagine for a second, you know a bell shaped curve, a normative distribution, if you move that bar, but what you've just done is you've increased the population 100 fold, right. Our ascertainment of autism spectrum disorder went from one in a 10,000, one in 1000. Now we're a few percent and I think that's a good thing. That's positive. I think people that are out there at first or second percentile in terms of social skill of being able to pick up on social cues, interpret them and act on them, being able to communicate effectively, especially your feelings and needs, more being able to pick up on other people's feelings, needs and wants. Being able to emotionally self-regulate some of the challenges that we identify as challenges that are those that folks with autism and experience. 

00:07:29 Dr. Randall Phelps 

We want to get intervention for those folks, and I want to be very clear. It's not about cure. It's not about wanting to eradicate neurodiversity. I think we should celebrate neurodiversity. 

00:07:39 Dr. Randall Phelps 

And we want folks who are neurodivergent to get some help so that they can communicate their needs and wants effectively and be happy and successful. And so, all of this is good. Identifying folks who do have social and emotional disability and getting them early intervention, special education, mental health services, social services is all a positive thing. Our office grew a little bit in the last couple of decades I've been there. 

00:08:08 Dr. Randall Phelps 

But a little bit and we're talking if it's grown maybe 50%. We need to grow our Services 100 foldand it doesn't have to all happen in our office. Our office does not have to balloon to 100 times its original size and I have colleagues in other areas also able to expand somewhat, but we're very, very far behind the level of need; we have a long way to go. 

00:08:34 Johnandrew Slominski 

Stepping back in time, Dr. Phelps, you had a very early interest in developmental behavioral pediatrics, and you had some important influences early on as well. Tell us a little bit about that. 

00:08:48 Dr. Randall Phelps 

In middle school, I started reading Oliver Sacks, the neurologist. Oliver Sacks really emphasized the importance of taking time with people and talking to people and understanding how a person's neurologic condition how do those—what is that person's personal experience of those conditions?  And that really appealed to me. I like stories and I like sitting with people and talking to people. So much of medicine is not about that. It's, you know, rushing in, getting very focused on, you know, the pathology not on the person. 

00:09:27 Dr. Randall Phelps 

And so as I went into medicine and into pediatrics, I found that developmental behavioral pediatrics is the one field that I could find where you get to do this. I mean I do have the luxury of spending some time getting to understand people's perspective. And again, I mean, it's ironic, right? We have this long wait list so maybe I should speed up, but the reality is that if I there's a point where if I were to speed up and treat my patients the way patients are treated in other clinics or other conditions, it would end up being counterproductive. We just have to spend the time. 

00:10:03 Dr. Randall Phelps 

So there aren't very many of us and there is a long wait list and yet, we do need to sit with our families and take the time. It takes a while to establish rapport with the child in clinic. You got to calm them down and convince them they're not going to get a shot in our office. We don't do that. And you have to play with little kids. You have to play. 

00:10:22 Johnandrew Slominski 

You know, I think we so often picture modern medicine as consisting of advanced imaging and MRI and lab tests and so forth. But to look at assessments in your practice, we'd probably see a lot of that play, right, because what we're really talking about here is human interaction. 

00:10:42 Dr. Randall Phelps 

Right. So that's what it is. It's when you start with little kids, we start with play and with bigger kids, we start with a conversation, and I think it is confusing because we're talking about neurodevelopmental conditions, and so I think there are families that are expecting, we're going to do fancy scans, functional MRI's and blood tests or genetic tests or EEG and we don't. I mean those things—structural assessments and levels of chemicals and electrical activity tell you very little about the mind at this point. We're learning more. We're developing those technologies, but they're not there yet. And so, the way we get to understand how a brain works is to talk to that brain or play with that brain if it's a little brain we play with it. It's a bigger brain, we talk to it.  So I mean, I do see people, you know, some way into the visit, you know you can see the parent making you know the parent will make eye contact me like OK I see what you're doing Doc. You're establishing rapport, I get it. And as the time goes on, they're like, OK, I think you've established rapport, when does the assessment start? 

00:11:48 Dr. Randall Phelps 

And sometimes parents will verbalize, like when are you getting down to the assessment? And it's like, this is it. We're talking. You're looking at. It's like it's not high tech. What it is is, it is time intensive. 

00:12:03 Johnandrew Slominski 

You've brought up time as something that's central to what you do, and I want to ask you more about that. In thinking broadly about medicine in the US, I have to imagine that time must be a factor in a lot of ways for new physicians as they're considering the profession of developmental behavioral pediatrics. 

00:12:23 Dr. Randall Phelps 

And that does impact the recruitment and it impacts the demand. I mean, for example, my fellows take a 50% literally 50% pay cut for the privilege of spending three years sub-specializing and on the other end of that they're going to make a pediatric wage. So, they are just, they're accepting. And it's not like it's an uncomfortable salary, the point is they are accepting a pay cut for the privilege of this wonderful and I think it's worth it, I love this work, but it is hard to recruit. 

00:12:57 Johnandrew Slominski 

And as a physician, it sounds like a core value for you is time spent with your patients. Is that a fair thing to say? 

00:13:07 Dr. Randall Phelps 

I think if medicine generally, I forget developmental behavioral piece percent. If medicine in general involve more sitting with people listening to their stories and what their needs are would be a game changer in a in American medicine. And we're not doing that. We have a healthcare system that does not motivate healthy choices. I think if we were to invest in listening to our patients, we would have a much better healthcare system and developmental behavioral Pediatrics, I train my fellows. That's what we do. We sit and we listen, we talk to the brains, and we listen to their stories and what they need and want. 

00:13:46 Johnandrew Slominski 

Dr. Phelps, I want to ask you more about the fellowship you've created for developmental behavioral Pediatrics at Oregon Health and Science University, which is now in its ninth year. Is that right? 

00:13:58 Dr. Randall Phelps 

Yeah, 9th year, yeah. 

00:13:59 Johnandrew Slominski 

So it's the first fellowship of its kind in the state of Oregon, and just a massive project to get off the ground. Nine years in, you've developed some momentum. Give us a sense for how things are going. 

00:14:13 Dr. Randall Phelps 

We've had three fellows graduate. They've all stayed in Oregon. They're all serving Oregonians. So that's a big win. We also have people retiring on the other end. So, at this point I'd say we're treading water. We are now going to be receiving funds from Oregon, from the state. That is going to be a game changer. It's going to enable us to go from 1 fellow at a time to two fellows at a time, and by 2027 we'll ramp up to three fellows simultaneously. We will triple our outputted fellows. We’ll have a fellow graduate every year, so that is—that will change things. So instead of just treading water and replacing the retirees. I see growth so over the next decade, we should be able to double and then double again in our number of fellows. And that's going to really make a difference. We also have another new program funded by the state where we can provide phone consultations to primary care providers. So, if primary care providers need access to a developmental behavioral pediatrician, rather than just referring and waiting for over a year, they can call me and make an appointment within a week or two and we can spend the time talking about what are some services we can put in place while the child waits. Maybe instead of the referral, what are some things that can be done?  Or, go ahead and place the referral, but it's going to be a year, so in the meantime, here are some local services, local supports, interventions that we can put in place while the child waits. So, I'm very excited about that and I'm excited about putting those things together. As our fellowship grows and we can staff that phone consult program, we’ll have more hours available to provide that consult. So, I really see over the next decade a substantial decrease in the wait and a substantial increase in the quality. 

00:15:58 Dr. Randall Phelps 

Plus, with fellows, we'll have more follow-up capacity because I'm able to supervise fellows and double book follow-up slots. So, I'll be able to increase my ability to see people back, which is good for the families and for the kids, but it's also good for me because I like having these ongoing relationships and I like—I don't want to just say, here's your label, have a good life. I like seeing people back and checking in and seeing that my recommendations are helpful, or if they're not,, adjusting them or even adjusting my diagnosis. 

00:16:29 Dr. Randall Phelps 

So, I'm very excited about all these developments and I'm delighted—I've never been so optimistic about our field in this state and I think it's going to be a game changer. I'm really excited about this next decade. 

00:16:42 Johnandrew Slominski 

You know, since we've talked about some of the places where the medical system falls terribly short, that's an incredibly encouraging message to hear. For parents and caregivers and families, we know that the weight to see a developmental behavioral pediatrician like you can be longer than it should be. But there are resources. Could you give a few recommendations for resources that are available to anyone in the US? 

00:17:11 Dr. Randall Phelps 

Thanks for asking that question. That's a great one. So, one thing that they can do is certainly if it's a little one, you know preschooler, they can call early intervention—families can call, they do not need a referral from any professional. It is a family referral program. It is free and public in Oregon, it's through the education system. And like the education system, it is free and public. 

00:17:32 Dr. Randall Phelps 

So you call your county’s early intervention program. You can look it up online, put in your county, put in early intervention and get the number. Make a call. They come out, they do a free intake assessment. You'll get some information, you'll get some guidance and if you qualify, you'll get some services and it's free and public. So that's something you can certainly do if it's a preschooler. 

00:17:54 Dr. Randall Phelps 

If it's, if you're talking about a non-preschooler or, and certainly if you're talking about any kind of behavioral health, we have in every county, there are behavioral health systems. Families can just call, they have drop-in hours. They—you can just call and make an intake appointment. The challenge is, though that we haven’t scaled up, so you'll call these places and there's going to be a wait, but the waitwill not be as long as it is for us. Other options, including depending on what the specific concern is, there are local speech therapists or occupational therapists, physical therapists. And the other thing, of course, is your primary care provider should be a resource. And we have a lot of terrific primary care providers. We're having more primary care providers as part of their training at Oregon Health and Science University, join us in our clinic. So, I really do think that you should look at your primary care provider as a resource for getting some answers, getting some help, getting some referrals. 

00:18:52 Johnandrew Slominski 

And since cost can be a barrier for many people, as you've mentioned, many of these services are available regardless of one's economic situation or insurance. 

00:19:02 Dr. Randall Phelps 

Correct. That's true. And you know, with mental health, you know, if you have Medicaid, there are agencies that are covered by Medicaid, you call, you make an appointment. You can call your CCO your coordinated care organization; they have behavioral health care coordinators. They can give you some numbers to call. If you have private insurance, you should have a behavioral health link on your website or if you have a physical card, there should be a behavioral health number on the card, and you can call and make an appointment. Or you can call and get a list of covered providers. 

00:19:36 Dr. Randall Phelps 

But yes, early intervention, it's income independent and the same thing goes for developmental disability services. So, if you have a kid who has an identified developmental disability, you can go ahead and call your county developmental disability organization. And depending on your county, it may be developmental disability services of blank county or it may be community living case management of blank county. But you call that place, and they also—they have respite support, care coordination and they can fund skill building supports very valuable service. So if you have a diagnostic label and didn't get that referral, you can go ahead and make that referral yourself. If you don't have a diagnosis, you know they do have a consulting psychologists at those agencies as well, it's another potential place to request an assessment. 

00:20:26 Dr. Randall Phelps 

So I think I think it's worth trying that that venue as well. Like I said, I'm very optimistic about some of these new initiatives and I think people genuinely want to understand themselves better, which is great. 

00:20:38 Dr. Randall Phelps 

But then we need to have people that can help people process those questions in an expert way. And that's the challenge that we have to rise to. 

00:20:48 Johnandrew Slominski 

Dr. Phelps, thank you for taking the time out of your busy schedule to be on the podcast today. It's been a pleasure to have this conversation. 

00:20:57 Dr. Randall Phelps 

Well, thank you so much. I appreciate it. 

00:21:00 Johnandrew Slominski 

You've been listening to my conversation with Dr. Randall Phelps, developmental behavioral pediatrician and director of the Developmental Behavioral Pediatrics Fellowship at Oregon Health and Science University. The Autism Annex podcast was developed by STAR Autism Support. I’m Johnandrew Slominski. 

00:21:23 Johnandrew Slominski 

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