Melanie Cole, MS (Host): There's no handbook for your child's health, but we do have a podcast featuring world-class clinical and research physicians covering everything from your child's allergies to zinc levels. Welcome to Kids Health Cast with Weill Cornell Medicine. I'm Melanie Cole. And today, we are learning about selective mutism, not something that many of us know that much about.

Joining me is Dr. Lauren Webb. She's a psychologist at New York-Presbyterian Hospital, Weill Cornell Medical Center, and an Assistant Professor of Psychology in Clinical Psychiatry at Weill Cornell Medical College - Cornell University. Dr. Webb, thank you so much for joining us today. As I said in my intro, not everybody really knows what selective mutism is. Can you tell us just a little bit about that?

Lauren Webb, MD: Definitely. And thank you for having me. Selective mutism is a childhood anxiety disorder that's really characterized by this consistent failure to speak in situations where we usually would expect speech despite speaking totally fluently, normally, usually being little chatter boxes in other settings. So, kind of the classic dynamic we see, though it doesn't have to be this is, you'll see kids really not able to speak when they're at school and then, like I said, little chatter boxes at home, they're very confident in their speech at home.

Melanie Cole, MS: So then, I mean, a lot of parents might say, "Oh, he's just shy. They're just shy," you know? So, how does it differ from just social shyness?

Lauren Webb, MD: It is a great question because it comes up and, unfortunately, a lot of kids with selective mutism do get labeled or mislabeled, I should say, as just very, very shy. And the key difference here is that kids with selective mutism, they're not going to warm up and speak. Usually, kids who are shy, they might need a warmup period, they'll start speaking, they'll act a little clingy, but they'll be able to work through that and then warm up and eventually speak in these situations pretty early on.

Children with selective mutism, they are going to clam up. They're not going to be able to speak. Even when people are asking them questions, it will not happen. They will not speak. It's kind of this social anxiety, this shyness, that's plus, plus, plus in a certain sense. And you will see them certainly potentially enjoying themselves in situations, smiling, laughing, all of that. But if you actually look closely, they're not talking at all, they're not responding to anyone. They're really just not able to actually speak or verbalize.

Melanie Cole, MS: What age do we typically see this start to show in our kids? What are we really looking for here?

Lauren Webb, MD: The typical age of onset for selective mutism or SM is about just over two and a half years old to about three and a half years old, or four-ish. So, the way I like to think of it is you'll typically start to see it emerge when kids are starting daycare, preschool, which makes sense. They're in a situation that's uncomfortable, where they have to learn these new skills and interact with a lot of new people.

What's interesting though is that the actual average age or mean age of diagnosis is six and a half years old. So, there's a really, really long lag time between when these symptoms start to appear and when kids actually are diagnosed. And that's not even when kids actually are able to receive treatment. That's just when they're diagnosed. So, it is something where a lot of people are not so aware of selective mutism or these kids, as we just said, are getting mislabeled as just really shy and people are missing the fact that they're actually not speaking at all, and they really do need intervention.

Melanie Cole, MS: Symptom-wise, is this something that you feel that, like, teachers might even notice first, or if they're at a daycare? Because that's when it's going to show up, as you said, at home, maybe they're a little chatterbox. But then, they go into this situation where then they really don't want to speak at all. So, are the teachers the one noticing this, the caregivers, the daycare workers noticing, "Hey, they're not speaking really at all"? And so, then in which case, what do we do next? Who is someone who really diagnoses this situation?

Lauren Webb, MD: Yes. So, you're absolutely right. Teachers are often at the front line of noticing this, which is why it is so important to help spread awareness about what SM is, just because a lot of people aren't aware of it and what we see, or kids essentially get passed through grades where at a parent-teacher conference someone is saying, "Oh, they're really shy, but, you know, they're doing a good job. They're well-behaved," which they usually are. But then, at some point, a teacher says, "Wait a second, they actually haven't spoken a word in class yet," but we often don't see it get flagged for quite a few years.

In terms of actually who can diagnose this, so if you are noticing problems or if you're suspecting there might be an issue, I encourage everyone to go to a mental health professional. A mental health professional can do an evaluation and try to figure out if your child meets criteria for selective mutism, or maybe this is a situation where it's more social anxiety. But they can definitely help you with that diagnosis and help get you started with treatment.

Melanie Cole, MS: So then, let's talk about treatments a little bit, Dr. Webb. What treatments are available for young children and how important is early intervention? As you said, there could be a lag time up until even six years old when the older that they get, I imagine the more difficult the treatment might be. So, we want to get this young. Tell us a little bit about what treatments are available.

Lauren Webb, MD: Early intervention is critical. It's not happening as often as we would like, but if you can catch this early and get your child in for treatment early, really, it can do wonders. Because we think of it as the longer it's going on, the more and more this lack of speech is being reinforced. The more it's reinforced, the harder it is to break what we call the SM cycle. To that point, early intervention, really helpful, trying to catch it before it's so just ingrained in the cycle.

In terms of what treatments work, so in truth, we don't have a lot of research on selective mutism. From what we have in research and also from our pretty substantial understanding, anecdotally, we know that a combination of what we call parent-child interaction therapy for selective mutism or PCIT-SM, combining that with cognitive behavioral therapy or CBT principles, along with exposure and response prevention or ERP, which is all about exposing people to their fears in a slow, gradual way. When we're able to combine all of those therapy elements, we're able to address the parent component that's part of SM. We're able to address the fear-based component and help kids face their fears, and also really try to address everyone involved in a child's life who might be inadvertently reinforcing that they don't have to speak when a question is asked of them.

Melanie Cole, MS: So, that brings up a good point. How can we as parents involve the school and the teachers and daycares? How should they all be involved and what are some mistakes? I mean, you and I have talked about OCD, and mistakes that some adults might make in their frustration. And I can see that happening here. "Just talk, just come out. It's fine," whatever it is. So, what are some mistakes that you've seen happen, and how can we as a community help our children when they are suffering from selective mutism?

Lauren Webb, MD: Selective mutism is something that is often so accommodated. We see these little kids who are so anxious and so frozen and not able to respond when someone asks the, for example, "What donut flavor would you like?" And we very often, as adults, jump in and answer for them and we help them get whatever it is that they need. Teachers do it, their classmates do it. It's actually quite fascinating to observe a classroom with a child with SM in it. The whole system will develop around them to really help protect them and buffer them. But what it inadvertently does is it creates this negatively reinforcing cycle where basically we are communicating to this child to their brain, "You were totally right to think this situation was dangerous. Every time it comes up, you're going to have to avoid. Seek out some type of rescuer, and really try to escape the situation in general." It is so critical to address that accommodation piece and help not only parents, but also teachers, as you pointed out, understand how they can try to start reducing accommodation and increasing expectations for what we call brave behavior or brave talking.

Melanie Cole, MS: Wow, this is so interesting. And I find it interesting how we all respond and, as you say, accommodation can become group-wide, where everybody is sort of accommodating this. That is just so interesting. Is this something that children would grow out of? Does it almost always require treatment? Tell us a little bit about the path that it takes as children grow.

Lauren Webb, MD: Yeah, it's a great question. And while we don't have a large body of research to think about or talk about this, we do have one research study that suggested that children with SM grow out of the key symptoms after about eight years, which is a really long time. So in theory, on one hand I can certainly see people saying, "Okay, maybe we just wait." And it is kind of a "phase", and we wait the eight years. My biggest caution though is that sure, I guess yes, the symptoms do start to dissipate, but at what cost? Those eight years, which could very well be more, are spent with having kids really struggle. So, kids will miss a lot of social opportunities. They will miss academic opportunities. We can't catch if they're struggling academically as easily.

We see a lot of problems with other anxiety disorders, emerging depression, low self-esteem, low self-confidence. It really leaves kids vulnerable to a lot of other risk factors. So, I really encourage people to seek treatment as soon as they can, which I will be the first one to admit, I know is also hard. Selective mutism treatment is hard to come by. It is difficult to find.

Melanie Cole, MS: Yeah, you made a really good point. I was thinking about that, where it can sort of encourage other risk factors for anxiety disorders that would make sense or depression, because they're not a part of that social situation. Maybe they can't play their team sports or get involved in social or school activities because this is a little bit crippling in that way for the child. So, it can lead to any of these other anxiety disorders, which then can go on for longer than the selective mutism would. That's really great information.

So, wrap it up for us, Dr. Webb. As this is something not everybody knows about, I'd like you to offer hope for parents or caregivers that are worried or a little overwhelmed by this diagnosis and what you'd like them to know about the treatment options and programs that are available through Weill Cornell Medicine.

Lauren Webb, MD: Like I said, I'll be the first one to admit I know it's overwhelming, because selective mutism is more rare. It is hard to find those treatment options. And I do want people to know that the treatment options exist. And we are every day trying to create more and more treatment options. So, you can find it through other therapists, even under the program I work for the Pediatric OCD Anxiety and Tic Disorders Program or POCAT. We've started an insurance-based selective mutism track in one of our clinics to help people find more affordable specialty care for SM.

There's also an increasing number of what we call intensive group behavioral treatments or IGBTs. How you will probably see them phrased is selective mutism camps. So, that's another great way to seek treatment. You can attend these intensive one-week camps over the summer that help kids learn how to overcome their fears. That's a really great alternative as well. And more and more research is being published every single day to understand how to conceptualize selective mutism and really establish the best form of treatment even though we do have a sense anecdotally how to do it, but it would be great if we could say, "We have this standardized gold standard treatment for people."

Melanie Cole, MS: How cool is that, a camp that probably is so rewarding and helps the child with this so much. That's really cool, and we're learning more and more about it. Thank you so much, Dr. Webb, for joining us today and teaching us about something we didn't really know that maybe people have misconceptions about, and you've cleared those up. Thank you again for joining us today.

And Weill Cornell Medicine continues to see our patients in person as well as through video visits, and you can be confident of the safety of your appointments at Weill Cornell Medicine. That concludes today's episode of Kids Health Cast. We'd like to invite our audience to download, subscribe, rate, and review Kids Health Cast on Apple Podcast, Spotify, iHeart, and Pandora. And for more health tips, go to weillcornell.org and search podcasts. And don't forget to check out Back To Health. We have so many great podcasts there. I'm Melanie Cole. Thank you so much for joining us today.

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