A neurologist shares what parents should know about autism in kids, including early signs your child may have autism, what to do if your child has symptoms, recommended therapies and more.
Learn about the world-class care provided by The Center for Autism and Developmental Disabilities at Children’s HealthTranscription:
Scott Webb (Host): This is Children's Health Checkup, where we answer parents' most common questions about raising healthy and happy kids. I'm Scott Webb. And today we're discussing autism in kids, the signs, symptoms and different levels of autism and so much more. And I'm joined today by our expert, Dr. Kimberly Goodspeed. She's a Pediatric Neurologist at Children's Health and Assistant Professor at UT Southwestern. Dr. Goodspeed, it's so great to have your time today. We're going to talk about autism and as I was just mentioning, I'm sure folks have a lot of questions and concerns, and so it's great to have your expertise and as we get rolling here, what is autism spectrum disorder and how common is it?
Kimberly Goodspeed, MD (Guest): I'm super glad to be here and getting to talk about this today. We take care of so many kids in clinic. And it's a topic that has become ubiquitous it feels like. My specialty has become known to lots of people because it's such a common disorder. So autism spectrum disorder is really a clinical diagnosis. It's a cluster of symptoms and it only becomes a disorder when it impacts somebody's ability to function in the world. I explain it as being in two buckets of symptoms. So we've got a bucket where you have social communication deficits. So you don't communicate your needs or your wants very well. You may not understand other people's emotions or feelings very well, or how those may relate to yourself, or even potentially assume that everything you're feeling is what everybody else is feeling as well. That's what we call social communication deficits.
But the other half of autism is a bucket where you have restrictive and repetitive behaviors. So these are things like getting stuck on an idea or a topic or a particular area of interest. Some of our patients become extremely proficient in all the different types of dinosaurs and they know everything. They can talk to you about dinosaurs for an hour, but they may not be able to tell you what they had for lunch today. And the other piece of that, that often I think it's overlooked and can be really impactful for patients, is sensory issues. So that can be both sides of that coin of too much sensory seeking behavior or too sensitive to sensory inputs.
So you may see kids that are wearing headphones out in public now because the noise of the world is too much and too overwhelming. Or you may see kids that have like a chew stick or something that they like to chew on, or a fidget spinner or fidget box, because they need to be manipulating something with their hands. And that helps them navigate through the world and helps them stay calm. But how common is it? And it's been on the rise for the last couple of decades and the newest numbers we have out of the CDC say that autism is as common as one in 44 kids. And I like to conceptualize that for families. That's every other classroom in the United States, in an elementary school, having a child with autism. So it's extremely common.
Scott Webb (Host): It really is and a lot to unpack there. And I appreciate all of that. And it really helps to sort of visualize this in terms of buckets. There's the two buckets. And interestingly, you mentioned the headphones. My daughter has a teammate whose sister has autism and she's always got her headphones because in these basketball arenas where we play, talk about sensory overload, it's just with the whistles and the basketballs and the screaming and all of that.
So I completely understand why she wears headphones. So a great way to get into this conversation. I think I've got the million dollar question for you. Do we know what causes autism ain children?
Dr. Goodspeed: Yeah, that's such a great question. And one that's almost impossible to answer today. There's probably a thousand different causes of autism. There's a lot of different theories out there. One of the leading theories that I'm particularly interested in, and a lot of my research sits here is in the genetics of autism.
Now, when we think about genetics, you can think about that classic, what we learned in our high school biology class Mendelian genetics, where, you've got two different copies of genes and those mix to make different features of a flower or a hampster. And the other way that we'll think about it is the genes that get passed down through our families.
So there's different ways to think about it. I think when we think about our genes that get passed down through families, those are heritable traits. So autistic traits may run through a family. Any number of us will have a couple of autistic traits, but again, remember it's only a disorder if it impacts your level of functioning and impacts your ability to participate in your world. So when we have heritable traits, you may have autistic traits run through families, but maybe a couple of individuals have a little bit more and are a little more impacted by those traits. For those disorders, we think about them as being genetic. So lots of different factors, are at play. For some of the kids that I take care of though, they may have pretty impaired cognitive abilities or have intellectual disability, or may also have other medical problems like heart defects or epilepsy or seizure disorders.
And for some of those kids, we can actually pinpoint to a single gene that had a mistake in it and something goes wrong with how that protein is made, which is what the gene encodes for, and that disrupts their brain function and their brain development. So we have these two different ways of thinking about how genetics can play a role in autism.
Host: Yeah, I see what you mean. And I've always wanted to ask an expert. So I'm going to ask you now you talked about how common autism is today. One in 44. Is it that it's more common now or is it that it wasn't diagnosed previously or as accurately, and that we just know more about autism in order to be able to diagnose it more accurately today?
Dr. Goodspeed: That is such a great question. And we get asked it all the time in clinic, right?
Host: I'm sure. Yeah.
Dr. Goodspeed: Are we just better at it now than we used to be. And we're over-diagnosing or over calling things. There's probably a little bit of that. But study after study will show the numbers are outpacing even what an over-diagnosis or an over calling of a disorder would account for. So it does seem like there is something driving it even more than just us saying we're going to call all these people with a diagnosis of autism.
Scott Webb (Host): And I think it makes sense. It's just prudent to err, on the side of caution. so I can totally appreciate your perspective on this and
Host: Wondering if there are different levels of autism?
Dr. Goodspeed: There definitely are. And so the way that we've described autism in terms of the labels we use has changed over the decades, but the core features are still there and they can date back to the early papers from the sixties when it was first described. And in the cluster of patients and it goes back to those symptoms we were talking about, but the symptoms can have variable impacts on your level of ability to sit through a classroom, participate in a lecture, do a job interview.
And so the newest manual, our diagnostic manual that dictates the different symptoms of autism and how we categorize it and classify it is broken down into three levels. So we have level one, level two and level three, where level one is the most mild of symptoms. And level three is the most severe of symptoms We also think about those in terms of level of support, still level one may not need much support at all. Whereas level three needs quite a bit.
Host: So Doctor, what are some of the earliest signs of autism? What can we be on the lookout for? Is there a beginning age when these signs and symptoms begin to manifest?
Dr. Goodspeed: The most common first symptom that we hear in clinic is language delay. So one of the very first times that a patient will come to attention at their pediatrician's visit is when they're not gaining those words and not putting those two words together. So most kids will have their first word by around their first birthday. And they'll start to put two words together by their second birthday. And in between that time period is when we see lots of kids get sent over for speech therapy evaluations and supports because they're not hitting those developmental language milestones. And then, the speech therapist will notice some of these other symptoms that we talked about, like repetitive behaviors or rigidity, getting stuck on the same concept and having a hard time moving through different activities. And so then they'll get referred for an evaluation for autism.
Host: Yeah. And we've discussed some of major signs and symptoms. Right. But I'm wondering, are there some other common symptoms or presentations, some things that, you know, us non experts out here might not associate with autism?
Dr. Goodspeed: Absolutely. And this comes up in clinic all the time for us. I very commonly will ask parents, how's their diet. Do they eat a lot of different types of foods or do you find that a struggle and that will often lead into, do they have constipation? And I get a lot of funny looks being a neurologist asking about constipation, but it's one of the most common symptoms that we see.
Lots of kids get backed up and we think it could be partly, they tend to have restrictive diets. Remember sensory issues can be a problem. And so textures of foods can be challenging for our kids or insistence on sameness. They may only eat chicken nuggets from a particular fast food restaurant, and that's all they want to eat for months.
So some of it is diet, but we think that there's also just that gut brain connection where, you know, something that went awry in the nervous system of the brain could also cause some disruption or dysregulation or malfunctioning in the nervous system that's regulating our guts. And constipation is really common.
The other thing that is super common and often overlooked is sleep issues. So lots of our kids with autism have problems with falling asleep or staying asleep or waking up really early at three or four in the morning. And some of our kids look like they could function on just a couple of hours of sleep a night, and their poor parents also have to function on just a couple hours of sleep a night.
Host: Let's say doctor, that we suspect that our child has autism. What should we do? When should we do it? How is autism diagnosed and so on?
Dr. Goodspeed: The first thing is talk to your pediatrician and your pediatrician should also be doing regular screeners for autism at two of their well-child checks. And that'll be a one-page set of questions where you get to fill that out in the office visit. But even if your pediatrician doesn't do one of these screeners, you can always bring it up to them that you're worried. You have a friend who mentioned something or you've seen something on TV and you're concerned and just have an open frank conversation.
If that conversation leads to your pediatrician agreeing that yeah, it does sound like there's some autistic traits here. The earlier the better is always the case in medicine in general and especially true for autism. So there's no harm in getting an autism evaluation with a psychologist. And then getting some therapy started. Oftentimes that's speech therapy or occupational therapy or both just to get you started.
Host: Yeah, let's drill down talk a bit more about this, the therapies and treatments. I'm sure there've been so many. What are the therapies and treatments that are recommended for children with autism and why are they so important?
Dr. Goodspeed: You know, it's really funny you mentioned that. There are lots of exciting potential treatments on the horizon, but what we have today is really a mainstay of what we've had for decades. It's therapy. So one of the main ways that our brains get better or learn new skills is through practice and repetition, right?
So our speech therapists, our occupational therapists and our behavioral therapists all work together on different aspects of being a human and learning how to be a kid thriving in the world. So the speech therapist will work on language abilities and will work on communication skills.
The occupational therapist can work on fine motor skills, which are often challenging in kids with autism. And they can also work on some of these sensory issues. Either finding ways for them to get those sensory inputs, which are acceptable in a classroom and not disruptive or working on habituating and getting used to some of those sensory inputs that are really challenging, like loud noises or touch.
And then I think of our applied behavioral analysis therapy or ABA therapy as the gold standard. It brings everything together and it just helps these kids learn the skills that they need to thrive in a classroom, to make friends, to ask for help, to take turns at snack time or game time, and how to regulate some of these really intense emotions that kids can have when they have autism.
Host: And doctor, I'm wondering, do some parents worry you're trying to sort of change their child and make them something different that they're not going to be the same child after they've been treated for autism?
Dr. Goodspeed: Absolutely I think that's one of the biggest fears that parents will have is that there's something wrong with their child or that they, that we want to change their child in some way. And that's by no means what we're trying to do. I think a lot of people, especially in our center are looking at ways to give kids the tools that they need, that they may not have been born with intuitively. They may need to learn how to do these things and how to participate in a classroom. But it's not to say that they always have to do those things. We just want to make sure that they have everything that they need to be able to live the fullest life that they want. And it comes from a place of being supportive and wanting kids to have the tools that they need at their disposal to be able to access their world, rather than to say, you can't do that autistic thing because it's bad. No, that's just part of them. We just want to make sure that they have other ways to get their needs met.
Host: Such valuable information today and to better understand all of this and I'm sure parents out there listening are going to wonder okay if my child is on the autism spectrum disorder, what can we do to help? What can we do to support our children?
Dr. Goodspeed: I think it's a great way to think about how can families help, how can the community help? How can we support these kids? And there's a great story that was written by the mother of a young woman with autism. And the young woman didn't have any expressive language abilities, but she could communicate in lots of other ways.
And she ended up being a beautiful artist and she drew a picture of what the cafeteria looked like or felt like to her. And it was just a cacophony of noise, you could just see and feel from this picture. And so what we think happens for children with autism and what we know from some of the adults that are able to describe this, when they have good expressive language abilities is we all have filters, right? That we can say, I'm going to pay attention to you right now on this conversation. I'm going to ignore what's happening on my computer or the ambient noises in the hallway. Some people with autism can't filter out all of those things. So all of that input comes at the same volume and at the same level of attention with their attention being pulled in a million different directions at one time.
And that's why it can be overwhelming. And so if we can think about how do we teach somebody to focus their attention, how do we teach somebody to be more calm and accepting of challenges? And so a lot of it is just breaking things down into very small steps, preparing and over-preparing. And so a great tangible example of this is school transitions.
So when a kid is going from, let's say fifth grade to sixth grade, and that's going to be at a new school, preparing them months and months in advance, practicing that drive to the new school, practicing a pickup time from the new school, getting them to meet their teachers, being able to maybe even walk through the school beforehand before it's real go-time. Anything you can do to prep that transition and make that transition comfortable before they actually make the transition officially.
Host: Want to have you talk about the programs and services that Children's Health offers for kids with autism, you know, maybe brag a little bit.
Dr. Goodspeed: Absolutely. I do want to just plug one thing too, before we move on past it, it's just we think about treatments for autism, but really any of these would be good treatments for any good human, right? It's, all of these practicing, habituating, prepping beforehand is good for anybody. And the only thing with autism is you may just need to do it a little bit more and a few more times. But really anything that's good for any human you could break down and expand upon and do with a little bit more thought and repetition, and that's the way to approach helping and supporting an individual with autism.
And to plug a few things that we have going here. So I work in the Center for Autism and Developmental Disabilities, and I couldn't be more proud of our team. We have a multidisciplinary team of individuals who range from psychologists to psychiatrists and then us in the neurology side who are neurodevelopmental disabilities trained.
So our psychologists are doing two different things. We've got a group who are doing mostly evaluations, so taking kids through those comprehensive evaluations that can take about two half days and several hours of testing and then at least an hour of feedback to go over all the results. It's like drinking from a fire hydrant when you go through one of those evaluations, but they're just full of tons of information to go back and reference and look at later and ask questions later and go over with your pediatrician as well.
We also have psychologists who are doing therapy. We've mentioned speech therapy, occupational therapy and ABA therapy. But in addition to that, some of our psychologists can do more individualized therapy. So let's say we've got a teenager with autism, who's also struggling with depression or anxiety.
They can take that teenager, work with them, talk through coping skills, work on different ways to manage that anxiety. But doing it through the lens of knowing this person has autism and how may I approach that differently? How may I tailor that a little bit differently to their needs. Our psychiatrist and our neurodevelopmental disabilities providers like myself are mostly seeing kids for psychiatric and medical evaluations.
So on the neurology side, we're looking for early signs of seizures, doing workups with genetic testing or brain imaging. And we're also managing medications, similar to what our psychiatrist will manage and some of those medications or things to help with symptoms of autism. So we mentioned sleep issues are super common and constipation or other gastrointestinal issues are also really common.
So we can manage some of those with just either over the counter or prescription medications. But challenging behaviors, anxiety, depression; they're also highly prevalent in kids with autism. And so sometimes we need to use some of those medications so that it brings down those symptoms enough that we can let our therapy do its work.
Host: Really informative and educational conversation today, Doctor, and as we wrap up what else would you like to share with listeners about autism, children, anything else you want to add?
Dr. Goodspeed: The place I'd like to end is in a hopeful note. So there's so much research happening in the world of autism. And I just want to throw this out there, research can be polarizing sometimes. And sometimes people are afraid to be participants in a research project, but a lot of our research in autism is fun.
So it may be interviews where parents get to tell their story and share their experiences. We've got a really fun project at the Dallas Zoo, which I'm super proud of and have been working on for the last couple of years where they've got a social, emotional learning program. And we've got kids that are going through that program and kids that are just going and hanging out at the zoo and see, does the program actually seem to help or does the zoo also just seem to be a good space? And then we've got a lot of research into genetics. We've got a great colleague, Maria Sherhore, who is discovering new genes in autism. And then we've got people like myself who are trying to understand as much as we can about these single gene disorders that can cause autism and with that, the hope is always that we learn something either about kind of autism at large or what makes these symptoms of autism come from the brain. But also can we treat it in a different way, that's more specific and not just ticking off at the symptoms, but actually getting at the cause. I just encourage families to consider participating in research if it's the right time and the right study for your family and ask lots and lots of questions, if you're approached for a potential research project.
Host: Definitely. There's just so much room for optimism and your positivity, your compassion. This has been really great Doctor. Thanks so much for your time and you stay well.
Dr. Goodspeed: Oh my pleasure. Thank you so much for your time as well. This has been such a fun conversation.
Host: Learn more about our autism program and services by visiting children's.com/autism. And thanks for listening to Children's Health Checkup. For more information, go to childrens.com.