Transcription:

Melanie Cole (Host):  Welcome to Expert Insights with the Carle Foundation Hospital. I'm Melanie Cole and today, we're discussing autism awareness. Joining me is Dr. Charles Morton. He's a Developmental Pediatrician with the Carle Foundation Hospital. Dr. Morton, thank you so much for joining us today. Tell us a little bit about the autism spectrum disorders and how common they are.

Charles Morton, MD (Guest): The second question, common. It's very common. So, if you take mild to more severe it's, approaching about one in 50 children, more or less, it's in that range, with girls not nearly as common, and sometimes it's harder to pick them out of the crowd because they're not quite as impaired compared to the boys.

But the spectrum itself is rather large itself too. So, I alluded to that a little bit with the females, but, the children who are extremely autistic as one might say, are easy to pick out. The children who have milder symptoms are more challenging to pick out. And since the DSM-4 went away and took with it a diagnosis called pervasive developmental disorder, not otherwise specified, which was overused and abused, and that's why they got rid of it, some of those very, very mild kids, are in a sense missed because they no longer meet the criteria for that. But it's the job of all of us to try to identify these children so that we can get some resources for them.

Host: Well, that segues nicely into the question of diagnosis and screening and why is a good diagnosis, so important as far as access to resources, which can really make a difference in outcome.

Dr. Morton: So, technically any physician, can diagnose a child with autism and not just physicians, but psychologists. Insurance companies who are the ones who are going to approve funding for some rather expensive treatments and also school districts, hold certain standards for diagnosis frequently not always, but most of the time. So, they'll want certain tests done to make sure that the child does meet criteria for autism so that they can make sure that those resources are going to the children who really qualify for those resources. That involves some more sophisticated level of testing, that's probably going to happen, you know, outside of a primary care physician's office.

Host: Yes. Speak about that just a little bit. When a child is screened for autism, what's involved in that and the importance of that diagnosis because the earlier the better, children can get early intervention and the services that they need. Speak about what's involved in that screening and then what's the next step.

Dr. Morton: So, the screening is really owned by primary care providers, nurse practitioners, physician assistants, physicians. It can come from teachers, schools. The question can arise, many parents accept the children as they are. And many of them are actually kind of afraid of asking questions related to anything wrong with their child. So, they'll go into a well-child visit. They really think their child has a problem, but what they'd like to walk out of the office is with the reassurance that everything's okay. There have been instruments developed. The most prominently used one is called the MCHAT.

That's M-C-H-A-T. That's free of charge. You can download it. And this is a standardized questionnaire that is recommended to be used at least a couple of different intervals. And there's also reimbursement for primary care providers using these instruments. So, that there's an encouragement to do these, and that one is relatively easy. And there's certain specific requirements to do a second check if the first screen is positive. But it's a way of finding those children as early as possible. So, that's what we want to do. We want to find them early. Once we identify that there's probably a problem, which is what screening does, then you can get them referred to a specialist or some kind of setting where a child can have a more definitive practice. The earlier you screen, the earlier the diagnosis, the better the interventions work.

Host: Well, let's talk about some of those interventions and what's going on today. What are some of the most exciting therapies available? And we know that every situation is different, Dr. Morton, but how can a child on the spectrum be helped in these therapies by the combined efforts of their parents, the healthcare community, the school district, the state? Speak about how this can all come together to help a child and tell us about some of the therapies available.

Dr. Morton: So, most children with autism are going to have a significant impairment in their communication skills and their social skills. Those are the big things. The things that you see, like the repetitive behaviors, hand flapping or jumping or obsessions or sensitivities, those are pieces of the puzzle to the diagnosis, but those are not the primary problem. The primary problem is social communication and social interest. And those things become obvious, usually as early as 18 months. It's hard to diagnose autism for me personally below two, two and a half, but you'll see things though that are like speech delays. So, that'll be a very common thing. My child's not talking yet. So, instead of just saying, well, let's just check it again in six months and see how they're doing. You can refer them, if they're less than three to early intervention. This stuff is free for the vast majority of people. It's readily accessible around the entire country. It's federally funded significantly as well as state funded and they'll come out and always for no charge, do assessments on the children. And when they find a problem, then they can start bringing in the therapies that they have available to work with the child in the home. Speech therapy, occupational therapy, not so much physical therapy, when it comes to autism, typically. Developmental therapy, social, emotional therapy. There are all kinds of resources, feeding therapies. Some of these kids have feeding problems. You can, you can start those resources super young. And that makes a huge difference. It takes the burden off the parents in terms of knowing what to do and gives them a lot of relief because the therapists become their best friends.

They become very close to the families and the therapist once a week, typically are out there working with the families in the home, teaching the parents what to do, checking on the progress. When you turn three, that gets handed over to the schools and the beauty of the early intervention below age three is that, that transition to the school is seamless. That all happens. The parents are highly involved in that process of coming up with an individual education plan for the school, but it works so well that the day you turn three or the next day, the school bus comes up and picks up the kid or the parents drive them to school if they can't stand the thought of the school bus, when they're just barely three-year-old and the kid goes to school. That's a different level of intervention. Now we're doing a more social setting. We're educating the children together. We're really working on social interaction with peers. So, it's a really different thing, really different emphasis, and those are really helpful things.

So, those are things that can happen for any child in the country, no matter what. There are some other therapies that you can pursue privately as well, depending on the insurance plans and even state funded insurance has gotten on board with one of the kinds of therapies, that's very interesting. The one you'll probably hear most about is called applied behavior analysis, but there are other forms of similar kind of therapies that are working specifically on problematic behaviors and especially on one of the biggest deficits of autism called joint attention. And just to explain that very briefly, but this is really crucial. Joint attention is if I talk, you listen, if you point, I look, it's people coming together and children with autism have big problems with this, but they can be taught this. And if you start young enough, then you can really change how they accept being with people. Then language becomes important because actually I care about what you're thinking and I want to communicate with you. So, all of a sudden words start to have importance. So, the ABA is a behavioral way of trying to work on joint attention. Speech therapy, all the other therapies are also working somehow, with joint attention too. So, it just puts a different focus on the situation with a diagnosis of autism and with a diagnosis of autism, specifically with many, but not all insurance plans, you can get ABA services. Those are intensive services. They're often 10, 20 hours a week. They're not cheap and insurance, there's state mandate for funding of that. So, and even the public insurance plans are now required to cover that. That's a new thing. I don't know where we're going to get all the therapists for to cover everybody, but that's groundbreaking and fantastic news.

Host: Well, thank you so much for that, Dr. Morton, and with this ever-increasing armamentarium of therapies available, as you were just speaking about, as we wrap up, please tell other providers how the medical home and the family's pediatrician can help parents to navigate the help that is available and what you'd like them to take away from this message today.

Dr. Morton: I would say the most important thing is that you're not alone. You don't have to know everything. I'm not alone. I don't have to know everything. There are resources through early intervention there are resources through the school, but there's a very large network of resources that are outside of the medical, the educational, the early intervention programs that are there to support families.

Parent support groups are great resources and all that stuff is happening via Zoom during the pandemic. There are many private organizations that are here to serve families who have children with autism. It doesn't matter where you live. There is something going on for families of children with autism, so that those children can get the resources that they need to access. Having access to a developmental pediatrician, a psychiatrist, a psychologist, organizations that really dedicate themselves to taking care of children with autism vastly increased the services. And gives not just the child, but the whole family a much better and much more optimistic outlook of the future and things have really changed dramatically.

So, it's not the fear diagnosis that it was. It's not an easy diagnosis. Primary care doctors are not by themselves. You know, there is help available and they just need to begin knocking on those resources. And when you find a good one, go back and I asked him, well, what other things can we do? And you'll find out they're all kinds of resources for the families.

Host: What great information. Thank you so much, Dr. Morton for joining us today. For a listing of Carle providers and to view Carle sponsored educational activities, please visit our website at carleconnect.com for more information. That concludes this episode of Expert Insights with the Carle Foundation Hospital. We hope the information gained will be applicable to your work and life. If you found this podcast informative, please share on your social channels and be sure to check out all the other interesting podcasts in our library. I'm Melanie Cole.