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Helen Dandurand (Host): The CDC estimates that an average of 1 in 36 children in the U.S. has ASD or autism spectrum disorder. Today, we are going to dive into what that means. Welcome back to the Well Within Reach podcast. I'm your host, Helen Danderand. And today, I'm going to be joined by Dr. Federico Herrera, pediatrician at Riverside Medical Group's Pediatric Specialist Bradley Office to discuss autism spectrum disorder and the signs, diagnosis, and support that go along with it.

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Host: And we're back with Dr. Herrera. Thank you for joining me today. We're glad to have you.

Dr Federico Herrera: I'm glad to be here as well. Thank you for inviting me.

Host: Of course. So to kick us off, could you tell us a little bit about your background?

Dr Federico Herrera: As you said it before, and because of my name, you can tell that I'm Latino in origin. I'm originally from Argentina, from the province of Buenos Aires. I've been in the U.S. for over 15 years, getting my residency at Stroger Hospital in Chicago. And I was doing my practice at Chicago's southwest side with underserved communities. And I particularly became very interested in this subject we're going to talk about today, because of the increased prevalence that we are seeing, and also I have three boys, 10, seven, and five, and my 7-year-old and my 5-year-old have autism as well, which made it, of course, particularly and personally more interesting and made me, I guess, not an expert, but I have a lot of insight to talk about and think about.

Host: Right, right. Not only are you actually an expert, a doctor, you know, you can also speak to it personally. That's really great. So getting into it, could you tell us in simple terms, I guess, what autism spectrum disorder is and how it can impact someone's life?

Dr Federico Herrera: So, I guess to start with, to kick it off, the official definition is a neurodevelopmental disorder that brings deficits in communication, social interaction, and repetitive and restrictive behaviors. In a few words, a patient will have problems communicating. The first thing that you'll see is it'd be like a problem to start to speak and to express themselves. Social interaction, it could be anywhere from not playing with the peers as parents would expect. And later in life, from not being able to participate or feeling comfortable doing like social interactions or even emotionally or even like relationship-wise. That does not mean that they cannot achieve that, but there definitely will be more difficulty towards that. And behavior-wise, the first tells would be more in the playing ground or the play area. How patients will play is actually very particular, I guess. It could be a word to be used, which they may not use adequately the toys that you provide, and patients will use them in different ways. For example, the pretend play that kids achieve by pretending they're doctors or pretending they're in the kitchen with the different tools, they will not be able to do that as expected.

Host: Interesting. Super interesting. My second question was kind of like more for parents out there. You kind of answered it a little, but I don't know if there's anything you want to elaborate on. I was going to say, what are some every day behaviors or signs that parents might notice as a first kind of trigger to suggest that their child could be on the autism spectrum? But you did kind of answer that with your like personal experience, just what is something to be like, "Oh, maybe I should look into that"?

Dr Federico Herrera: So, interestingly about autism, there's not an exact defined age when to expect those to show. I'll actually definitely give you my own experience with my two little boys. It can happen as early as six months. We're expecting some social smiles, tracking, seeing different objects; that the parents may not see that they smile as much, their gaze is a little bit more lost; not fixating on faces, which is something really interesting for patients at that age, or instead of like, again, fixating on parents' faces, they start looking more towards other objects or things that are more shiny.

But then, anywhere from 6 to 12 months when they start doing the babbling, they might start seeing that they're not so responsive. When you talk to them, they should respond by babbling or try to imitate the sound of the voice, and they may not do that as much. Definitely between 6 to more towards 12 months, the eye contact may be reduced. But then again, that may not be the case. So, it was not my case, for example.

And usually, closer to 12 months, the babies know to respond to their own name. And usually, parents may notice that when they're called by their name, they don't respond to that. Over 12 months, that's when usually pediatricians overall, we are seeing those changes. In my personal case, I can definitely tell you my kids development for both of them were perfectly spot on. And then, after 12 months to 15 months, I saw an arrest on the progression and even a regression on the things that I achieved before. And after 12 months, definitely they're supposed to start being more verbal, a few words here and there. And then, after closer to two years, they'll start using even small sentences, like two to three-word sentences. And definitely, the biggest tell that most parents are worried about, that he doesn't talk or he cannot say those words expected that when they compare, especially with other family members, they may have kids their same age or even their own kids that are older, that they achieved that earlier.

Definitely also between one and two years old, we started seeing the poor eye contact, and the behavior started being a little more prevalent from flapping of the hands, moving the fingers, closing and opening the fist around close to the ears. Instead of like playing with the cars, cars are a typical toy that the first thing the parents will start noticing and they start like rolling them and then vroom-vroom, playing like anybody that would think the cars would do, they start putting them more in straight lines or organizing in a certain pattern, that's I guess the pattern aligning of the cars or blocks instead of actually doing what you want them to do. They are very fixated on that. And that's part of the repetitive and restrictive behavior. Because if you try to get them out of that situation or that order, they will definitely throw tantrums that all babies, all kids throw tantrums, but the tantrums that patients that have autism are definitely more overwhelming for parents, and they're very hard to bring back to baseline, to make sure they can, again, be back to the activity they were supposed to do.

Host: I think that's really, really helpful, like that deep dive that you just did if a parent is out there and like thinking, "Is this something kind of..." You gave a lot of different things that they can kind of think of. And then with that, you know, if they have any kind of questions, if a family suspects that their child might have autism, what is the process then going into getting a diagnosis? Like, what kind of things do doctors look at? And I know at that age, you have like multiple appointments all the time, so they should be regularly getting checked in that way too. But how does that work?

Dr Federico Herrera: That is very accurate. Usually, with every single appointment, just by talking with the parents or really like looking at the patient, at the baby from literally from the moment they're newborn-- not going to say newborn, we're not going to make a diagnosis-- but from the moment they're newborns until like every single visit, we have newborn visits at one month, two months, four months, six months, nine months, 12 months, 15, 18, 24, 30, and three years old, and yearly from there. In every single of those visits, we always play with the patient, sometimes even just leaving them by themselves on the stretcher, we can actually like see how they behave, what are the things they do, they're interested in playing with the paper, they look at the dad or the mom when we approach them. All those behaviors, generally with every single visit, we look for it.

American Academy of Pediatrics recommends developmental screenings at 9 months, 18 months, 30 months with set tools. At Riverside, we use particularly the ASQ, Ages and Stages Questionnaires, which we provide to the parents. We have five different categories they have to fill with five to six questions each of them, in which we get a total number. And with that, we assess the overall development, not just the behavior part, but also the motor and the social part. And then, at 18 and 24 months, we do use particularly the the M-CHAT. The M-CHAT is a tool particularly developed to try to capture patients with the behavior problems particularly to try to make an early diagnosis of autism. And usually, that's the tool that we can use from 16 months to 30 months, but they are set to be in those two appointments, 18 months and 24 months.

Host: Got it. And so, like you just said, that is an early way to diagnose. And so, I've heard that early intervention is kind of key for kids with autism. Can you break down why it's so important and what parents can do to be involved with their kid's progress?

Dr Federico Herrera: The moment we start seeing patients not achieving the normal development, depending on which area, whether speech, motor, we do put a referral for the program, which is called early intervention. Early intervention does a full analysis of the patient, the whole spectrum. And then, they check the possibility of getting speech therapy, physical therapy, occupational therapy, and developmental therapy. Depending on what the patient, we guess we can get one, two, three, or all four. That is a program that goes all the way until the patient turns three. And then at age three, usually the program, the coordinator of that particular case will work with parents to already start working and putting him in an appropriate school system that will be able to offer most of those, if not all services.

And usually, by the age of three, it's usually when they get into the school system, that most specialists try to make the first appointment to make the diagnosis with a tool that they use with the ADOS-2. And that's something also that is good to you know. Autism is one of those that me particularly-- again, I'm not going to call myself an expert, but I had almost 15 years of experience in the field and two boys that I've seen growing up, one is five and the other is seven years. So, I have a few years of experience to seeing how every step of the development went. The only three specialists that can actually make an official diagnosis of autism is a neurologist, a developmental and behavioral pediatrics, and a psychiatrist. So, the earliest we can put those referrals for them to be checked by them is the best.

The only situation we currently have not just in Illinois, I think it's in the entire United States, is that there's very few specialists, so there may be a long wait. So, the earliest we can have that suspicion that the patient may have developmental delay, which could fall under the spectrum, autism spectrum disorder, that's why it's called a spectrum, that we make an earlier referral. So, hoping that patient will be seen between six months, 12 months, or a little bit more in some hospitals. So, I guess that's the best way to try to make them promptly and timely check and assess.

And now, the gold standard for therapies for patients with autism is called ABA, which is Applied Behavior Analysis. And in order to get that approved by insurances overall, they do need to have the official diagnosis of autism made by a specialist. So, that's also one of the most important things to also get an official diagnosis, if it is the case, to be able to keep the ball rolling and make sure we don't waste time. The earliest and the strongest therapies, intervention that we achieve, not just with through therapies in school, parents are key part of this. And that's something I always tell my parents, like they have therapies, that's great. But usually, therapy is about 40-45 minutes once weekly, maybe twice weekly for each of them. But the rest of the hours the patient is at home, the parents are the ones responsible to continue doing those things that they learn during therapies, and that's the best, that is key, and that's the way the patient is going to continue evolving and continue to improve.

We've seen cases of patients with autism, I have a lot of experience with a lot of patients that they were very delayed, and I continue seeing them, and after 10 years all continuous, and they are doing great in school. We had a patient in my prior practice that was going for college, so they can have a completely normal life. And I guess this kind of tailors one of the questions I think you had later for me, what is the impact of all those stigmas that are around autism? Because the biggest confusion that every time we talk about autism, and it happened to me, not to put anyone on the spot, but one of my colleagues, when I told them they were officially diagnosed with autism, the first thing that that colleague says is, "I'm sorry." And I think that's a stigma we want to remove for patients with autism.

Autism nowadays is not what it used to be 20 plus years ago. With therapies, we know they can achieve, they can advance a lot, they can have a plentiful life, completely normal. Of course, as I said before, it's a spectrum. There are patients that are deeper in the spectrum that regretfully will not be able to achieve maybe a full, independent life. But thankfully, the majority of them, they will.

So, maybe removing the stigma of the patient with autism are what you always see in some movies, especially older movies. I know there's a TV show nowadays that showed that a patient with autism, it's a doctor and that is part of the removing the stigma that patients with autism not necessarily will have cognitive issues, which is in a few words, like pretty much how smart they are. The patient with autism, they are mostly associated with maybe cognitive and other problems like ADHD including, we see the more association with it, but none necessarily will happen.

So, the first thing I try to talk to my parents when I'm bringing up the possibility of autism and making the referral is that the first thing that you need to remove from family members first, then everybody else around the patient, is to make sure they understand that he's a normal kid with special situations that may be tailored and may be adjusted for him to have a better experience even in kindergarten, school, college, family reunions. Things can be adapted and definitely can be made literally to the point that a patient with autism can have a normal life.

Host: Yeah, I think that is so important. And just everything that you cover there kind of spans on how parents can, you know, play a large part in this from making sure that they are getting that early intervention, and then being there and understanding the therapy and helping them through that, and then also being able to be the liaison to communicate those things to family and friends so that, you know, it can be just as normal and smooth as possible.

Dr Federico Herrera: Exactly.

Host: All right. We're going to take a quick break to talk about finding a primary care provider.

Riverside knows that health is your greatest asset and that your primary care provider is your partner in health. Find a primary care provider that fits your needs at riversidehealthcare.org/primarycare.

All right. And we are back. So, my next question here is, what kind of support services are out there for families who have a child with autism?

Dr Federico Herrera: So, a little bit going back to what I was mentioning before, of course, the Early Intervention Program, working with your pediatrician to put him in all the therapies that are adequate and available, depending on the area, and some areas that may not have the availability of getting an ABA. But parents that want to find more information about autism particularly, and like what services are out there as well, beyond what may be at reach, there's different sites that you can Google, or you can directly put their website, like Autism Society of America, Autism Speaks, and Autism Navigator, some of them. But there's plenty more you can do research and definitely find a lot of information to get more information, know what to do, how to do those things. And also, sometimes some patients, thankfully, are very mild that some pediatricians, sometimes the time is cruel. And then by seeing the patient in a 15 to 20-minute visit, 30 minutes maybe, may not be able to demonstrate everything that we expect to see in a patient with autism. So, parents actually like literally asking questions directly. Don't be afraid to express themselves or like finding any moment to bring those questions.

And then, the good thing about technology nowadays, and that's a very good resource, it's actually all the phones that we carry now, all the smartphones, getting videos primarily. I have a lot of videos of my own kids that I took on purpose. Things are very subtle and I'm going to maybe tell you this little story about my middle child, Nathaniel, Nate. I remember one day when me and my ex-wife went to a Cracker Barrel. And then, you know, they have outside all these rocker chairs and they have these little checkers game. And at one point, my oldest one and him were like playing with the checker pieces. And I didn't notice initially when they were playing with it, how they were moving them. But then when I went over that video, not even the next day, it took a few months and I actually decided I wanted to go through those videos, and I noticed that he was picking up the piece and put him on the floor and putting them straight and organizing them on the floor. Some things are very particular that we may not be able to see. But then, when we go back, we say, "Oh." And so, things like getting a lot of videos is good. Of course, please spend more time playing with your baby, not just all the time behind the camera. But getting recording of those things actually may provide much more information than some maybe give credit for. So, taking videos is very, very good tool to bring to the pediatrician to show them like, "This is what I noticed." And then ,that may provide a ton of information to help us achieve the correct diagnosis.

Host: That makes sense. So, you did mention before the misconceptions, things like that. I had a question here about what are some common misunderstandings and how can those be cleared up? I don't know if you have any other specific ones or if you kind of touched on that before.

Dr Federico Herrera: Yeah. I think I mentioned a lot of what I had to say regarding that in the prior question. But I guess, I do want to make a remark on like patients with autism, their mind, the way they think, how smart they are, is perfectly spot on. There may be association in some cases that we might see an association with a cognitive delay, a learning disability, ADHD, or other diagnosis. But pure autism spectrum disorder, cognitively speaking, it's not an issue. And by, again, correct and adequate intervention in a timely manner and with all the therapies associated, patients, they can show you easily that they can achieve normal education and proceed advancing education and getting a normal job like anybody else.

Host: When it comes to school, how can teachers and classmates kind of create a more welcoming space for kids with autism?

Dr Federico Herrera: I guess the first thing to mention there would be to educate them, again, pretty much everything we talked before, that not necessarily because he does not look you in the eyes, because he does not want to participate in sports, or even in recess, they may be preferring to stay by themselves doing something else, that doesn't mean they are different. Just the way they process the whole environment is completely different.

The way autism, I guess, the way I heard once somebody saying this, and I think it's a very appropriate, a very nice way to understanding, they are able to see the world the same way you do, but the way they process that, the way they sense it, the way they feel it is different. The way you can get amazed or stare in the sun, at the Mona Lisa that you put out there, a famous painting, and be able to spend hours on watching that Mona Lisa, the patient with autism may find fixation on like watching the wheel turning on car or putting my middle son on the spot, he likes textures. And in my clinic, we have this texture in the wall, which is kind of like a textured picture. And I can assure you he definitely would go and first of all put his hands and then he would put his lips, and that's something also like a behavior wise that something with patients with autism they do a lot. They have a lot of oral fixation. They like putting things in their mouth. Again, I was mentioning this to one of my patients today, the lips and the tongue is the most sensitive part of our body. So by putting their mouth or things in their mouth or touching with their lips, that's how they get the most of that sensation of that particular object, that particular texture.

And going back to the question, knowing the patient, educating first from autism and then getting to know the patients, what things overwhelm this patient particularly. And again, going back to things technology wise, I remember seeing this video in which a senior patient with autism would get extremely overwhelmed by loud noise. And the entire conference room, I don't know how many people were in there, when they announced that he was going to come and receive the diploma, everybody from parents to all the kids and all the teachers, they gave complete silence for him to be able to walk down the aisle and get his diploma. And understanding that patient, what he needs just to be able to do something common as in walking down the aisle, those are things that can be done. It's about understanding the patient, the friend, our son, that he needs that adjustment just to be normal, just to like be able to do things that we take for granted that they may be able to do so with just some adjustments here and there.

Host: That makes sense. I mean, it's the same way that if you have a request of something that makes you more comfortable in general in life that your family and friends would want to know what would make you feel most comfortable and make you feel the best. So, I think that's a good lesson for school and for all of those times where you're interacting with people and family and friends, to just be able to explain those, communicate those so that they have the best chance of succeeding.

And I think your analogy was really, really good that you were talking about before that too, that you kind of segued in there, so that was all really good info. I did have one more question. You had mentioned the oral fixations and stuff, so would that also, this is kind of a random sidebar, but with pacifiers, would that be something? Do they tend to maybe have those longer than other children or just something that came up in my head?

Dr Federico Herrera: It's a very good question. And I can actually bring different cases or different patients that I had in the past. It's not so much how long they will use the pacifier, but how they use the pacifier. Patients that are like using the pacifier with the silicone in their mouth, just like doing the normal suction, maybe biting in more, but chewing the silicone off, or maybe like flipping it and actually biting more on the hard plastic. And then, they maybe wanted to use that longer, but not because of the suction itself or the fixation of the use of the pacifier, but more for that oral part in which they look for that, like chewing things. Again, I'm going to put my middle one. He's not going to like this one. He hears back from me talking so much about Nate, but he's completely orally fixated. Tobias, my youngest one, no, he's not. Nothing at all. But Nate. I mean, I would walk him down the street, just like walking perfectly fine. And all of a sudden, you see his mouth full and say, "What are you hiding in your mouth?" I'm pulling out a rock. I don't know where he got it from. I promise I'm not a bad parent. I would like to have my eyes on him like 24/7, if I could. But that guy is a magician and he will put everything. And he goes to a room, like playing something and you call him, you notice that he's like, "Hmm" with his mouth closed. And "What do you got in your mouth?" And he pulls something. He never, ever swallowed anything, because it's not about, "I want to try this, how it tastes," and then swallow it. No, not at all. It's just getting that sensorial sensation in the mouth and how to let that texture feel. And that's what they do. And they want to get that experience the way we experience different sensations. Like maybe he'll be a great chef because he has an amazing sensorial part in the mouth and flavors as well.

Host: And definitely interesting how different just even brothers can be. So obviously, the whole spectrum and, you know, you have different symptoms for each person or different things that they might do. Yeah, super interesting. So my last question here is, are there recent findings or advancements in autism research or treatment that you find exciting or think people should know about?

Dr Federico Herrera: There's a lot of studies, there's a lot of research, so I'm not going to say there's not a lot of progression on this field. Particularly, there is, there's a lot, especially with all the new genetic testing. There's more and more research done on the whole chromosome mapping or microarray. There's different genetic testing that actually are recommended by the AAP to be done to make sure that there's some syndromes that may also be likelier to have an autism as well.

My personal experience after getting a substantial amount of patients with autism, every time I did the genetic testing, I've never seen, not even once, I got a patient with syndrome particularly. But I know there's a lot of studies that's literally mapping the entire genome, try to see what is maybe the common ground to this.

The second part would be more environmental, which again I have no data honestly, personally, but I think there's a lot to do with environment, whether it's toxins, different way of components of different foods. There's a lot of things out there regarding that as well, but again, nothing to pinpoint particularly.

And the last one, there's a lot of data also behind intestinal microflora that's also being studied, nothing being found. I know there's a lot of blogs or parents talking about maybe following a gluten diet or avoiding some particular foods, which I always tell my parents the same thing. If it doesn't hurt the patient and you want to try it, by all means, do try. I tried it, honestly. I'm a pediatrician. I think I have ample knowledge, not maybe the best, but an ample knowledge about it particularly. But when you're a parent, you want to try things to make sure everything that is out there to make your son, your daughter better. So if it's not going to hurt them, try it. And if you see that it's working for you, although data may not show that it really helps, I've got nothing against it. I'm also very pro supporting parents' decisions to try different things as long again as it doesn't hurt the patient. I know it's a lot of culture behind it. Different cultures have different options like teas or foods or different things to try. And by all means, be my guest, try everything that is out there. Just maybe talk to your pediatrician first. So if you're going to do a restrictive diet to make sure that he gets all the nutrients, all the vitamins, all the minerals that he needs, calories wise, the same thing. But again, if he doesn't hurt your son, your daughter, please, by all means, try it. And you can always go back to your pediatrician and tell your experience.

Host: That's a lot of great insight and information. I mean, everything that you've said today has been really great. Is there anything else that you feel like you need to add before we close up today?

Dr Federico Herrera: Going a little back where I said, like, halfway through the interview, I always tell my parents, there's not such a thing as a silly question. We're not going to look at you funny. I'm not going to raise my eyebrows. Everything counts. Everything is beneficial. Anything is positive. Everything you have to ask, ask, regardless if it is developmental or anything about your growing baby, toddler, child, adolescent, always ask. You should not find any pushback, any resistance from a pediatrician if it is nothing to be aware of, which is like everything's spot on, don't worry about it, everything looks amazing. But it may be something that you thought was not valuable, maybe something very tiny, but that tiny to be in a six month old, as I was mentioning before, it could be of a lot of value later on. So, don't be afraid to ask.

Host: Well, thank you so much for joining us today, Dr. Herrera.

Dr Federico Herrera: Thank you for having me here.

Host: Yes. And thank you, listeners, for tuning in to the Well Within Reach podcast, brought to you by Riverside Healthcare. For more information, visit riversidehealthcare.org.