Episode Transcription 

Brandon: All right, Dr. E. First question this week is, my son is 12 years old. He has always had SM. We had a meeting at school and the staff indicates that he is pretty shut down, does not interact with his peers at all. They recommended he be tested for autism. Yet at home, our son, our son seems fine. What do you think we should do?

Do you think we should get him tested?

Dr. E: Thanks, Brandon. This is a great question. And I get asked this question, I’d say almost on a daily basis. First of all, a child can have both autism and SM. And I know sometimes there’s confusion on that, that you can’t have SM and autism. And that is just not true. We definitely see individuals that have both SM and autism.

You have to remember that SM is a social communication anxiety. It’s not just about the mutism. In fact, that’s just a symptom. And hence some of the symptoms of SM can be mistaken as autism. For example, a shutdown, overwhelmed and non engaging child who is socially withdrawn may also be a child with extreme social anxiety or anxiety from other sources, hence the whys of SM.

So I can’t state whether your child has autism or not, but a question to ask is what is your child like at home? When comfortable, when a child is on the spectrum, their autism symptoms exist in all environments, not just one or a select environment such as school. And that’s really important to know because even though symptoms may be more extreme in school, for example, more anxiety, if they truly have autism and are on the autism spectrum, they will manifest autism spectrum symptoms.

Even in their home comfy environment, the most typical social communication symptoms we see in teens with higher functioning autism are problems forming friendships and keeping friendships, mistaking social cues or body language. Misinterpretation of conversations being incredibly concrete and very, very literal in conversations.

Finding it easier to form friendships online because it’s a much less body language involvement online and it’s more text. Poor eye contact and very inconsistent eye contact. Sometimes these individuals will express they just don’t fit in. They don’t feel like they can make friends or have friends and it’s an actual frustration.

Many have little interest in friendships or they want or they don’t want to be around same age peers They will literally say I don’t care. I don’t really need to be with anybody I don’t really want any friends or just leave me alone and they will possibly even just avoid opportunities to be with other peers and it’s more than just a social anxiety and because individuals with a social anxiety will have an innate desire to want friends, but it’s just really difficult to have friends.

So most individuals on the autism spectrum, of course it’s a spectrum and it ranges, really have difficulty. It’s almost as if it’s a puzzle they can’t figure out how to interpret the body language, what people are saying, how to start conversations, keep conversations going. It’s a puzzle. So even when they’re comfortable, it’s still a puzzle that.

frustrates them a lot. And you can see avoidance and increased anxiety and so forth. And depression can also result. So again, what is your child like at home? Does he have the above symptoms? You mentioned he can be fine at home if he is a socially appropriate 12 year old who doesn’t manifest these symptoms.

He has friends is appropriate with friends. And even if he doesn’t have regular. Friendships because the opportunities haven’t been there because of the, the selective mutism or social communication anxiety, he has appropriate skills. So maybe with a sibling or a cousin or with you, there is appropriate skills there.

But is he inappropriate? Even if mute, he can have appropriate skills, right? However, if there is any doubt,

I do recommend autism testing. The ADOS, A D O S and the A D I R are the gold standards of testing and can provide you excellent information on whether or not your child has autism and their present social communication functioning.

It can also help rule in or out autism, which is really, really important because it can direct you to more appropriate services, accommodations, and interventions that are autism specific. But if he doesn’t have autism, it can point you in a whole different direction into what you need to look for in terms of.

Why is your child shut down and not engaging with peers in the school environment? So I can’t tell you whether to have your child tested for autism. I can’t tell you if your child has autism, but I can tell you that if there is any doubt, you may want to consider it because it’s only a win win to get that information. So it helps you know where to go.

Brandon: That’s really interesting. Okay.

Question number two. My son mutism. So far this year, he’s been leaving his test blank. It seems like he doesn’t even want to try. Why does a child with SM do this?

Dr. E: Another really great question. We always are assuming selected mutism is about speaking and not speaking and I know I reiterate that a lot but it’s just so common where people focus only on the speaking and getting a child to speak, but there’s so many Different aspects to this child and how he is presenting.

As I say often, we need to look, listen, and learn. So here’s the question. What is your son telling us by this avoidance? In my experience, there are reasons why a child is avoidant of schoolwork. However, I do have a few questions. One, is his avoidance of tests in one particular subject or in all subjects?

Two, does he typically start and complete work on time when in class and it’s not a testing situation? Does he do his homework with minimal effort at home or does he resist or become frustrated with homework and again, is it limited to a particular subject area? Of learning. The answers to these questions are needed to gain more insight.

If he is fine, quote unquote, when in a non testing situation, he starts, he completes work on time and does his homework with very minimal effort or frustration, then he is most likely manifesting test anxiety. Therapy would absolutely help here and perhaps school accommodations. For more time, different testing environment, et cetera, and working closely with the school to help minimize that anxiety and to determine with him why he might be feeling anxious.

Another question. If he is having challenges starting schoolwork on time and doing his homework, for example, he avoids, he gets very frustrated or does not complete it and it’s often a battle. Then we need to evaluate him for learning challenges. If this goes unaddressed, increased avoidance frustration will only increase.

Especially as he sees others doing his work and completing assignments. This will negatively affect his overall confidence, self esteem, and cause less social communication functioning. So his selected mutism symptoms will only worsen because his anxiety and frustration are increasing. You can request an evaluation via the IEP team and or get this testing done privately.

If a school system is not able to assess because your child is mute and isn’t able to use his words and they don’t know or have the skills, they just don’t know how to accommodate him, you can request an independent educational evaluation by an experienced center or clinician who knows how to accommodate.

A child or a teen with selective mutism. I will say this is something we spent a great deal of time with at the SMART Center. Our evaluations, whether it’s psychoeducational evaluations, specific learning disabilities, differences autism spectrum. It really is like the full gamut of what we test for and why we do that is kids with SM are not just mute.

We do see some of the Ys having processing difficulties, having some learning challenges, and that is affecting their give take back forth of social communication. It’s also in combination with maybe social anxiety. Maybe they have sensory processing challenges. So all of that might be causing them more stress and anxiety.

But if we’re assuming they’re not doing their schoolwork or they’re not doing their tests and that’s selective mutism related, I would say, what does that mean? Because it’s not about SM doesn’t cause anything SM is a result of. So if your child is challenged in school, And it’s affecting their ability to function in school.

We need to have them evaluated so that we can provide appropriate accommodations and interventions that will also incorporate social communication, accommodations and interventions.

Brandon: As a follow up to that, I’m curious, what happens in that environment when a teacher, when a student isn’t doing their test, completing their test, essentially they’re failing the test.

What does the school and the teacher usually do? Do they just fail the student or do they sort of work with the School and the parents to figure out like can they come back in and take it? Like otherwise, they’re just gonna get you know Their whole semester or their whole school year could be altered negatively because they’re not taking their tests. So what happens?

Dr. E: Well in an ideal world we want to look listen and learn what is this child telling us? I do hear too often almost like a frustration like he’s refusing to do his tests or Refusing to do school work or he’s choosing not to do it. So are they failing them? Well, that’s what i’m trying to say not necessarily There are some that expect them to do it and they’re questioning why.

Is this a choice? Are they being defiant? Are they being oppositional? That’s worst case scenario. Best case scenario is the look, listen and learn. What is he telling us by him not doing it? So in an ideal world, what I would tell a client, a patient of mine, the family is we need to figure it out because no child wants to fail.

No child wants to refuse their schoolwork. If they’re not doing it, there is a reason and we need to figure out that reason. And so sometimes it’s our patients, the families, that have to go to the school and state, and sometimes we write the letter for them, or guide them through the letter writing process I’ll just write a letter and say, this is what I’m seeing in my evaluation.

I highly recommend an evaluation because of X, Y, and Z. And so we get the ball rolling. In an ideal world, the school would be coming forward and saying, quote unquote, Jeremy’s not doing his tests. We’re really concerned. We need to meet together and hopefully with the clinician this. Child is working with and the family is working with, they can guide them to get appropriate testing and figure out why.

Because if we, if we assume it’s a choice and we’re failing them, all we’re doing is creating this vicious cycle of, and then it leads to more anxiety, depression, school refusal, et cetera, et cetera. So the whole goal is, To figure it out and to help and support that child not to Make them feel that they’re doing it on purpose and it’s a choice because in all of my years Which at this point a lot of years i’ve never seen a child choose to fail or choose not to do their school work It’s always a message that something else is going on.

Brandon: Okay

Question number three. I have a seven year old with S. M. We’ve been doing exposures for the past two years, which includes lunch bunches, which is led by the counselor with one or two peers and then also some play dates outside of the school.

We haven’t seen much improvement, though. Overall, my seven year old is talking to some adults, but with peers She will play but only responds with a few words and will never initiate. What else should we try? Should we start medication?

Dr. E: Great question. I want to start with a few concepts. Comfort precedes communication.

Progress does not occur in a group. Therefore, we need to build comfort. And connection and do specific strategies away from the group. And we do that four ways. First way is the buddy process. So it sounds like that’s what’s happening. Two play dates with those or get togethers in this case, play dates because the child’s only seven with those same buddies, ideally out of school and so forth and then into school, but also small groups in the room and out of the room.

In the room is spot work, working in a small group somewhere in the room that’s kind of a set place over and over. But then out of the room, it’s a lunch bunch, a friendship group, a recess bunch, working in the counselor’s room during resource time it’s called. Whatever environment it is, it’s a small group away from.

So that’s what a lunch bunch is and that’s why they’re doing it. So I love that they’re doing the small groups out of the room. I love they’re doing some play dates, but what I’m not hearing is the specific interventions they’re doing with that child in these environments because we often assume, set it up, have a lunch bunch, have a friendship group, do a play date, have a small group here, there.

That’s great. And the setup is there. It’s like the frame of the house is there, but it’s the nitty gritty of what strategies and interventions they’re doing to help the child progress. I used to think really early on in my career, just put them in these situations, build some comfort and voila, it happens.

And I can’t tell you how that is just not true. In very young children with simple engaging and kind of comfort building, yeah, some of them can spontaneously just become comfortable. Pretty quickly and begin to speak, especially if it’s over high interest. That’s best case scenario. But as children age, and this child is seven, she’s not three.

It, there’s a lot more interventions. It’s how you ask questions, when you ask questions, where you ask questions with who you ask questions and so forth. In addition, we know the more that we can help lower their anxiety, maybe asking choice questions, maybe using visual supports, all of that lowers their need to think and process the same buddies over and over again.

What I’m hearing here is this child does speak. She may not be elaborative. She may not be conversational. She may not be initiative, but she’s speaking. What may be missing is consistency in buddies, friendships, actual connection. We also didn’t talk about the whys of SM. I have plenty of kids with SM that I see that can speak.

They can answer one or two words. They’re not initiative. They’re not elaborative. They’re not expressive. Is that comfort based or is there? Perhaps a speech and language challenge, like an expressive language difficulty where putting their words together and saying them and initiating their thoughts is really, really difficult.

So I don’t know what the whys of SM are with this child. I can say she’s verbal with peers and teacher peers and adults. But she’s not initiative, elaborative and expressive. It sounds like maybe more with adults. Is it because she spends more time with adults? So she’s gotten more comfortable with adults.

Is it that she doesn’t have a lot of time or connection with peers? Often now post COVID, we’re seeing kids that during those formative years, in this case, this child was four to six years of age. four to five years of age. Like she was missing out on social communication opportunities, and if she doesn’t have siblings, for example, it’s even harder because it, there, there aren’t children around.

So I don’t know what the ins and outs are. Here. I would not start medication right now till I knew what the, why is a best Sam were. What strategies you were working on to help children bridge from kind of just simple one or two words Sometimes we will help with back forth interview based questions We’ll do different games activities that allow for a question answer question answer things like hi.

How are you? Good? How are you? I just started school helping them develop these kind of next step questions. I will say that’s more worked on in older children and younger children. It’s often kind of through the games and activities and if they don’t have an innate language difficulty then at home when they’re comfortable assuming comforts there, they should be more elaborative, especially as people are begin to ask more open ended questions.

So do you want red or blue? Blue. Why do you want to color with blue? Oh, I want to put, I like it because that’s my favorite color. What’s your favorite pet? A dog. Do you have a dog? Yes. Oh, what kind of dog do you have? And asking

more open ended thought provoking questions helps a lot of these kids develop those skills.

But if teachers are only asking choice, forced choice questions and not really asking questions, and we hear this a lot that. They don’t ask a lot of questions because they don’t want the kids to be anxious, but it is about facilitating. Don’t wait, facilitate. So what I’m hearing right now are the need to develop accommodations and interventions based on this child’s unique needs, which involve understanding the whys of SM and the baseline stages of social communication to know what stages we’re bridging up to and knowing when to bridge down.

The larger the group, the more you’re going to bridge down maybe meaning like if you’re verbal in a small group, you might be using transitional strategies in a large group till they can get a little bit more comfortable or sitting closer to the teacher so the teacher can purposely ask questions.

But again, prompting other kids to go up to this child and ask some questions. Where is your math book? Did you do your homework? Do you want to play outside? Like there’s lots of things that we can do as adults to help facilitate the next. steps in social communication to help this child become more expressive, elaborative, and initiative.

Assuming there are no innate challenges such as speech and language and so forth. And again, is this child bilingual and only feels comfortable in the language these other kids are speaking? Or is she not comfortable in that language these other kids are speaking? So there’s just so much more to this question that I’d want to know to really be able to help direct.

Brandon: Last question. What tips can you share about traveling with a teen with selective mutism? I’m most concerned about traveling through busy airports, going through security, And then also taking public transportation. So I guess like trains or buses.

Dr. E: Right. Well, first of all, I would never have anyone that is mute in a social situation and cannot speak up for themselves to be out and about on public transportation, even driving a car, unless they have the ability to answer a question.

You can certainly prepare non verbally and have like non verbal means of sharing that it’s difficult for me to speak and so forth and that we can definitely talk about. But first of all, preparation is critical. You’re talking about a teen here. So this is somebody that’s not three or four, but somebody old enough to understand, Hey, we’re going to be traveling, preparing that child for what’s going to be happening in the travel. Are you going on to an airport? As you said here, going through TSA, having to answer some basic questions, being prepared for that. We do something called action plans. Action plans are when we kind of outline the social communication, social, the social communication encounter.

And what that means is who’s going to be there. What can they ask? What is your answer and what could you ask in that scenario now based on their stage of Comfort and what we’re working on either a parent brings them in maybe it’s nonverbal and they just show the answers Maybe they can answer maybe it’s scripted.

So again, I’d need to know this Where this teen is in terms of social communication, because as you know, I see it as a bridge. I don’t see it as speaking or not, but respecting where they are. And when you’re going through TSA, that’s not where you’re really working on next steps and progressing them across the bridge and allowing them to just get through that situation.

I will say that when going through an airport, you do want to have some sort of letter that you can provide to TSA that’s signed by your treatment professional that says, Hey, my child has selected mutism. It’s difficult. If this is an anxiety disorder, he may not be able to answer you. So therefore either ask me or he’s able to respond either non verbally or through gesturing.

We do have letters that we provide to our families to help them with that. And if one of the listeners is listening, we certainly can help provide some sort of letter that is a generic letter that we can give to individuals so they just need to email they can email support at selective mutism center.

org and we will be happy to provide that TSA letter. We will actually include that as one of the resources as well. When we’re going through whatever, going to a hotel, what can, that’s an action plan. Who’s going to be there? The gentleman or the woman behind the desk, they’re going to ask questions.

What can they ask? What are their answers? So, yes, we can work on our next steps by. Planning ahead as to what questions are going to be asked, rehearsing those questions and answers, and then coming up with questions you may need to ask. Working on frontline, handover, takeover, really working the skills when we’re out and about in these kind of vacation or traveling situations.

I only mentioned TSA to minimize that because of the stress of going through the airport. That may not be where you want to kind of work on everything. However, when you’re out in a restaurant or in a store or at the hotel. When you’re going on public transportation, these are areas that you may want to work through.

But again, I wouldn’t have my child going on public transportation unless they can speak or at least have a recording of something. I just would not be comfortable with that. But the more you can prepare for out and about, help your team be ready for to encounter different social communication opportunities and see those as areas to practice.

That’s what my recommendation would be.

Brandon: I wanted to go back to one of the things you said in the very beginning about not having this teen out and about by themselves. What happens when a teen with selenomythism turns 16 or 17 or 18 and they get their license? What does that look like in terms of letting them kind of go, you know, drive around and do whatever they want to do? Because if they’re having trouble talking to strangers. You know, that’s, that could be an issue, right? So what, what happens in that scenario?

Dr. E: So I want to back up for a second. That’s a really good point. Cause I get asked this again, often about driving and I have had parents be okay with their children getting their license when they are completely mute and they will put like a note in on their phone or they’ll have a note in their notepad.

The child, the teenager, or a note in their glove box and so forth. I personally am not comfortable with that. I tell my families this, it’s, this is an area to motivate the teen to work on strategies and interventions because one of the most common comments I get from parents is my teen is just not motivated.

She just doesn’t seem to want to work on her goals. I don’t know what to do to help my child do these things because nothing really motivates them. And I tell families there’s always something that will motivate them. And as teens start to learn. Get into that driving range more teens than not. I’m not saying all teens, but more teens than not will Want to drive their peers are starting to drive, especially if they have friends.

So this becomes a motivation It’s not a punishment that we’re not having them get their license It’s a motivation and it’s also a safety issue. I’ve had so many situations, one was just two weeks ago Where a child was driving, she was driving from one place to the next.

She got a flat tire. Right. And went on the Then what did she do? She tried to call her parent, nobody answered. Eventually, someone came over to her on the side of the road and she couldn’t talk. And she literally panicked. So I’d want to work through emergency situations. And that family did not have an emergency situation intact.

The child is now terrified to ever drive again. So you can imagine that was a traumatic experience for that child. So more times than not, it’s not advantageous to be a driver of a vehicle. Just like taking public transportation, if you are completely mute in case, there are scenarios that you need to be able to deal with in an emergency situation.

And if it requires your voice, then I wouldn’t be putting that child in that situation until they have reached a point that we feel safe that they could get through an emergency situation. Right. So you almost use getting their license as leverage. They can’t get it unless they can work on their goals.

Right. And I don’t want it to be seen negatively. It’s not, you can’t get your license unless you talk. That’s not the message I’m giving that child. The message is, listen, to be able to drive, you need to be able to speak up. If something happens, you need to be able to have a way to communicate. If, God forbid, something happens, you get in an accident, you don’t feel good, you have pain, you need to reach out to somebody, a policeman asks you, or a policewoman asks you questions, you need to be able to communicate back.

What if you get lost? What if you get a flat tire? I mean, there’s, there’s a lot of unfortunate situations. What if you get in a car accident? Again, I’ve had that happen and therefore that’s the language we use is that we want to be able to help you feel safe. I mean, we don’t rattle through every emergency, but we say that you need to be able to have a way to communicate so that if something did happen, you were able to communicate your needs because.

We can’t just enable their lack of social communication. We need to help them if they have the ability to be able to use their words eventually. And that’s just a fact. If they’re not using their words, I don’t feel safe with kids driving cars on their own. Because I feel like that could be a problem.

So it’s said in more of a matter of fact way, Brandon, rather than, if you don’t speak, you can’t drive way. Do you see what I mean? It’s like, hey, we know you want to drive. Let’s work together to make that happen. And this is why we’re working on our social communication so that you can drive. So that you can take a plane across the country to see your friends.

So that you can go on public transportation if that’s what you want when you’re on vacation. Like, So that you can go to the Phillies game and get your tickets at will call, whatever that might be. It’s about helping them reach their potential and kind of guiding them in a coach like manner rather than in a disciplinarian, if you don’t do this, you’re not going to get that.

That’s never how I talk to kids. It’s about working with them closely and helping them realize why they need to work on this. And we’re going to start at a stage and a step that’s comfortable for them. This is why when I work with any age individual, I usually, I always use their feelings, whether it’s a zero to three with younger kids or a zero to five with older kids where five is the hardest or scariest and zero is the easiest.

And I trust them. When I ask them, I don’t not believe them. I trust them and because we’ve done an evaluation and we understand them I kind of know how they’re feeling in these situations So we can help guide them to the next step in a safe way where they’re not feeling over the top anxious But it’s in a way that helps them feel safe and there’s trust

Brandon: Okay, I feel like we answered some good questions some interesting points Anything else you want to say before we get going?

Dr. E: No, I think we did pretty good here.

Brandon: All right. Well, we’ve been doing these once a quarter. How do you think they’ve been going?

Dr. E: I think they’re going great. I think that a lot of these questions aren’t just from the individual that wrote them in, but they’ll will relate to so many, so many of our listeners, which is why I love it when people send in the ask Dr. E questions, because I know that if one person’s asking it. There’s probably thousands and thousands that have the same question. So

Brandon: Yeah, that’s why we do these. Cause I think it’s a good, it’s a good way to use the podcast to air out some of these questions that a lot of people probably have.

Dr. E: Yeah, no, I think it’s great.

And I really do encourage Our listeners to submit questions. We will do our best to answer them through our blogs, through our podcast through our social posts. We do read them all and we do our best to get them done. And I know, Brandon, you’ll get some resources on how to have our listeners submit questions.

Definitely, definitely. All right, well thanks for listening everybody, and we’ll see you guys at the next Ask Dr. E. Bye everyone.