Introduction and Overview
I am excited to talk to you all about selective mutism (SM) today. Many people are curious about how I got into this field. I am a clinical psychologist, but despite the fact that selective mutism is coded under anxiety disorders, I had never heard of selective mutism prior to my work experience. All through graduate school, I do not think anyone ever even mentioned the words “selective mutism.” But when I was in post-graduate-school work, a little boy came in to our clinic, and he had really severe selective mutism. He was 10 years old at the time and had never spoken to anyone at school, never spoken to anyone in public, and about a year prior to coming into our clinic, he had stopped talking to his parents as well. There was some indication that he still talked to his brother if the doors were closed, but we were not even certain about that. So it was a really severe presentation of selective mutism, and I just became really interested in working with him, and working with him effectively. Through working with him and the natural process of that therapy, I became very involved in the selective mutism world.
At this point, it is most of the population that I see. I still see others with anxiety, but most of the children that come in to our clinic have selective mutism. They are really fun to work with mostly because - and maybe this is selfish - it is really neat to see the gains that intervention can make. I love having speech pathologists on my team because I think that even though this is an anxiety disorder, it is also a disorder of pragmatic speech, and it affects speech in such a significant way that speech pathologists can be very impactful during the intervention.
In this course, I am going to talk about what selective mutism is, and how you successfully evaluate for it. Hopefully, I will set you up for the next step, which would be intervention. I will also be doing another course on the treatment, or the intervention of selective mutism.
Introduction to Selective Mutism
The history of selective mutism is interesting. It was first identified in 1877. There was a gentleman at a boys' boarding school that noticed that several of the boys in the boarding school were not speaking, so he called their parents and said, “Something is wrong. Your child is not speaking here at school.” The parents said, “Well, that is strange, because he talks just fine at home and I have never noticed a problem.” So he got very interested in this issue, and named it Aphasia Voluntaria. He had two main hypotheses that contributed to this name that he gave the condition. Partly, he believed that it was a voluntary act - that these children were choosing not to speak - and he believed that it was happening secondary to some sort of trauma, abuse or neglect in their background history. (People were very psychodynamic at that time).
In 1934, this condition finally made its way into the Diagnostic Statistical Manual (DSM). At that point, they renamed it elective mutism. They still had those same two hypotheses about it -- they still believed that this was something the child was choosing not to do - hence the elective part of the name - and they still believed that there was some sort of trauma in the background that was causing this.
In about 1994, our research finally caught up, and they renamed it selective mutism because they were finding that it did not seem that the children were choosing not to speak; it seemed like it was somewhat out of their control secondary to anxiety. They were also not finding any sort of history of abuse, neglect, or trauma in their background, at least not over and above what is typical in a clinical population; research shows about 10% of kids who come in for psychotherapy have abuse, neglect, or trauma in their background, but they were finding that same percentage in kids with selective mutism. So it did not seem like that could be the cause. What they were finding was that these kids were very anxious, and seemed to have a genetic predisposition and a family history of anxiety, so the hypothesis was that this was more of an anxiety disorder. But interestingly, back in 1994, they did not put it with the anxiety disorders in the DSM. It was grouped with the “other disorders of childhood and infancy,” which is like the long-lost island of diagnoses that no one knows what to do with.
Definition, from DSM-5
In the most recent DSM, they finally subsumed it under the anxiety disorders, so now it lives there along with social anxiety, generalized anxiety and the other kinds of specific anxiety disorders, which seems like the natural place for it to be. The definition, per the newest DSM, is that it is a specific anxiety disorder. I think it is easiest to think about it as a specific phobia of speech and/or communicating, because for some of these kids, even nonverbal communication - like gestures or nods, shaking their head, shrugging their shoulders, writing - can be difficult for them to do, because those are communicative gestures. The definition also states this is a consistent, ongoing failure to speak in specific situations, especially at school. School tends to be a “perfect storm” for these kids. I think it is because there is so much social pressure and demands that occur within the school, and there is a performance anxiety component to this disorder that is pretty significant. As we know, children are always performing in school in some way; whether it is academic performance that they are being judged on, or social performance, or behavioral performance, they know that they are being evaluated to a certain degree, and so school tends to be a very challenging place for them. For most of the children that I see, though, this generalizes to any kind of situation outside of the home or with family.
A very typical presentation for a child with selective mutism would be a child that does not speak, or speaks very little, in school, and does not speak or speaks very little in public when people are attending to them. They will talk to their parents, usually, in the store, but as soon as someone else starts paying attention to them they freeze. They do not speak, or speak very little, to extended family members that they do not see on a consistent basis.
It is not due to a primary language disorder, but it often co-occurs with language disorders, and we will talk about that in a few minutes. Other disorders like stuttering or autism have been ruled out as the cause of the lack of speech. That does not mean that children cannot have both autism and selective mutism. In fact, there is some research that suggests that children with selective mutism are at a higher risk for also having a comorbid diagnosis of autism. But the children that I see who have autism and selective mutism might have difficulty with pragmatic speech, or good back and forth conversation, or being aware of other people's feelings and perceptions – even at home - but they still speak at home, and they do not speak nearly as much in public.
This problem is relatively rare. It is found in about 1% of children. We have good evidence to suggest that that number is growing, but there have not been any recent prevalence studies, so we are not entirely sure.
We know that this behavior is self-protective. It is not deliberate oppositionality, even though it can look very oppositional in nature. I have some children who, when I try to prompt them for speech, will run and hide. Sometimes, even though they are not talking to me, they will scream at me. We really believe that this comes from a place of self-protection; that when they are put into situations where they are prompted to do something they are fearful of, they do what some of us do -- which is to fight back. We try to get out of that situation because it is so overwhelming to us.
Mutism for about the first four months of kindergarten, or the first typical classroom experience – perhaps a full-time preschool - is still considered normal. We also believe that mutism for the first month or so of a new grade is still generally within the realm of typical. So we typically do not diagnose selective mutism until at least four months into kindergarten or one month into a new year of school. But if there is a long history of children not talking in public situations and they are two or three months into kindergarten, then even if we cannot diagnose them at that point, it might make sense to start intervening.
In terms of who can diagnose SM, my understanding is that it is psychologists and psychiatrists, and the American Speech-Language-Hearing Association (ASHA) actually says that speech pathologists can also diagnose selective mutism.
Obviously, the mutism is a common trait, although that happens on a continuum. There are some children on the severe end of the continuum that probably talk very little or do not talk at all outside of the home. Then there are children on the milder end of the continuum with whom we might ask, “Are these children just shy? Are they socially anxious?” Because if you get them one on one, they will probably answer you, although it will be the shortest answer they can possibly provide, and it will probably be very quiet. We probably would still consider those children selectively mute or severely socially phobic, depending on how they present. Just because they will respond does not mean that they do not have selective mutism.
Also, these children often present with a blank facial expression, freezing, or poor eye contact. Specifically because of those first common traits, you might notice that the most common misdiagnosis of selective mutism is actually autism. A lot of these children present in school very frozen, and with a very flat affect, not speaking, not engaging socially, and schools or practitioners will oftentimes misattribute this to an autism spectrum disorder until they find out from the parents that the child does not present like this at home. Seeing a video of the child when they are comfortable will oftentimes move practitioners and schools away from a consideration of autism.
These children tend to be slow to respond. So even if they do answer you, there tends to be a long latency before they do.
They have heightened sensitivities and excessive worries. Again, we believe selective mutism to be an anxiety disorder. As we understand it, if you have a genetic predisposition to anxiety that runs in your family, and you have some of the biological indicators of anxiety, then it is like your light switch is flipped on for all anxiety disorders. You have a higher probability of having other kinds of anxiety as well, and these children are no different. It is very common that they will also have generalized anxiety, obsessive-compulsive disorder (OCD) features, and social anxiety. About 90% of children with selective mutism will also be diagnosed with social anxiety, but those are two different things. Selective mutism is a specific phobia about speaking or communicating, whereas a social phobia is more the fear of having attention drawn to you or being fearful of how others are judging you. Many children with selective mutism will have both of those characteristics, but there is an interesting subset that have selective mutism yet are very happy to be the center of attention. They will even draw attention to themselves, as long as that attention is not prompting to speak.
These children tend to be oppositional, bossy, and inflexible in the home setting. Parents will know that they are the most difficult children in the house. They are more likely to have temper tantrums and act out in the household setting, and we do not know exactly why this is. My best hypothesis is that it is exhausting to not talk all day long every day, and also to have to pay attention so closely to what is going on socially and academically, because if you miss something you cannot ask a question. You have to fall in line. So they are really spending a lot of time and effort just trying to attend and follow through and cover up if they do not know what is going on. By the time they get home where they feel comfortable, they are just exhausted. I think at that point they act out.
These children do tend to be intelligent. If you can test them in a valid and reliable way, they tend to score around the average range or even slightly higher than average.
They also often tend to be bilingual. Research suggests that about 30% of children who have selective mutism are also bilingual. We are not sure exactly why this is, but again, we have a hypothesis. Our best hypothesis is that these children already had a temperamental genetic predisposition to anxiety, and then when they are put into a situation where they are asked to learn and acclimate to a new language and culture, they go into what most people call “the silent period” -- where somebody is learning a new language and they are trying to understand it prior to consistent expressive use of the language. Most people come out of that silent period in approximately six months, and start expressively using the language on a fairly frequent basis. Interestingly, children with selective mutism do not tend to come out of that silent period; even though they are understanding and picking up the language, they are not expressively utilizing it. What is really interesting is that with many of these children, even if you speak to them in their native language, they still would not speak to you. At some point the silent behavior becomes a part of their behavioral repertoire, and even if they were able to speak to you comfortably in their native language, they still would not.
Shyness vs. Selective Mutism
I always try to point out to people that there is a difference between shyness and selective mutism. I find that parents and friends will tend to use those two terms interchangeably, and I try to push people away from doing that, because they are separate.
Shyness is more of a temperamental trait. It is more consistent across environments, whereas selective mutism is very specific to the prompts that are being given or the environment the child is in. With shyness, children tend to have a “warm-up period,” but that does not usually take that long. It might take 10 or 15 minutes to warm up, whereas children with selective mutism might take a very long time, or never truly warm up. Children who are shy will usually still give you that little shy smile, or they will nod or shake their head, whereas children with selective mutism might just look entirely frozen. So, when people use the term “shyness” for children with selective mutism, I will usually say something like, “You know what? Actually, Johnny is not shy. He is so funny and engaging and outgoing when he is comfortable, and he is working really hard to get comfortable.”