Disclaimer: The following blog post is not intended or implied to be medical advice and cannot be interpreted in such a way. This share is intended to give a factual view of the condition of selective mutism as someone who is diagnosed with it and is only intended for informational purposes. Always seek the guidance of your doctor or another qualified health professional regarding your health or medical condition. Never disregard the advice of a medical professional, or delay in seeking it, because of something you have read in this blog post or any other part of this blog.
This share has been proofread by a licensed professional psychologist to ensure as few mistakes as possible. This doesn’t take away that there’s a possibility of mistakes in this blog post.

Note: An addition to this post is shared here: https://snowcalmth.com/selective-mutism-and-autism/

If you’ve read this blog in the past, you’ll know I’m diagnosed with the extremely rare combination of autism spectrum disorder and selective mutism. This diagnosis was done by a professional psychologist and has later been confirmed on 3 separate occasions by 3 different professional psychologists to be correct. This is something I’ve been attacked over here online, as this according to some sources impossible, claiming that the DSM-5 confirms this inability. However, this is not true. There’s nothing said in the DSM-5 that would state that you can’t have the 2 conditions occurring at the same time. Although, I could have missed something. But that would mean this would also apply to every single psychologist I have spoken to, and even what several psychologists state themselves on several different sources online. Anyhow, we’ll return to this later in the post, as there’s much more to be said about this.

What is selective mutism?

So, I hear you thinking, “what is selective mutism?”.
Selective mutism is a complex and severe anxiety disorder that causes someone to be mute in certain social situations. Think for example an inability to speak at school, at the store, or even at home. Although it may appear like shyness, as people with selective mutism are most often well-mannered and polite, it isn’t shyness. The muteness comes from a true inability to speak, out of fear. Sadly, though, it’s often mistaken for shyness and left untreated. As selective mutism doesn’t go away in time, it could cause major problems in your teens and adulthood, including the fact that it becomes harder to treat as you age. This is made worse by the fact it’s also very often misdiagnosed as autism or a communication disorder. This is due to selective mutism coming out of anxiety, not trauma or any other identifiable cause, which makes it very hard to correctly diagnose this. To repeat, trauma does NOT result in selective mutism, this is a myth that’s spread way too often, causing a lot of stigma about selective mutism. (Post-)Traumatic mutism is part of a PTSD diagnosis, not part of selective mutism. They’re very different.

So, there are some ways to identify selective mutism for those who have got a watchful eye. When it comes to autism and other communication disorders, there’s usually a specific way they respond to a social situation, lacking any true changes. This is very different for those with selective mutism. One of the ways is that someone with selective mutism can be very talkative and relaxed one moment, but then become silent and guarded as someone else approaches. Another is a frozen, angry, or scared look when asked to speak outside of their comfort zone, which has to do with this being something that we’re afraid of. There’s also the usage of non-verbal gestures, like pointing, shrugging, and nodding, to communicate in difficult situations, like simply an unfamiliar person being near them. And a highly sensitive nature to others, as well as being very watchful of others. These are all different compared to what’s seen among autistic people and most of those with communication disorders.

As an important side note, as many people tend to forget this part: you can have all symptoms and still not have selective mutism. You only have selective mutism when this causes significant problems in your life and doesn’t disappear. It’s similar to not all hyperactive people having ADHD.
Also, it’s important to be aware that this form of mutism doesn’t originate from a lack of knowledge or comfort with the spoken language.

To be clear, let’s repeat what I said before in a more specific way by quoting the diagnostic criteria of the DSM-5:

  • Consistent failure to speak in specific social situations in which there is an expectation for speaking (e.g., at school) despite speaking in other situations.
  • The disturbance interferes with educational or occupational achievement or with social communication.
  • The duration of the disturbance is at least 1 month (not limited to the first month of school).
  • The failure to speak is not attributable to a lack of knowledge of, or comfort with, the spoken language required in the social situation.
  • The disturbance is not better explained by a communication disorder (e.g., childhood-onset fluency disorder) and does not occur exclusively during the course of autism spectrum disorder, schizophrenia, or another psychotic disorder.
A Look Into My Life: When you are unable to speak (selective mutism) 1

Selective mutism or autism or both

I already started this blog post about it. And if you just read the diagnostic criteria above of the DSM-5, you should already know what I am about to say. Although there’s a myth that the DSM-5 states that you can’t have an autism spectrum disorder and selective mutism at the same time, the DSM-5 factually states that the diagnosis of both is possible when it doesn’t occur exclusively during the course of autism spectrum disorder. And this is complicated, which is true. But it’s explained by the DSM when the combination does happen. To quote:

Individuals with an autism spectrum disorder, schizophrenia or another psychotic disorder, or severe intellectual disability may have problems in social communication and be unable to speak appropriately in social situations. In contrast, selective mutism should be diagnosed only when a child has an established capacity to speak in some social situations (e.g., typically at home).

Source: The Diagnostic and Statistical Manual of Mental Disorders

To understand this better, I will need to give a bit of attention to specifically autism spectrum disorder. Although I have written a post about the specific subject of autism spectrum disorder before, I did skip over one of the most important stereotypes of autism, which is the belief that autistic people don’t speak. This isn’t true. Just look across YouTube to find a huge amount of channels by autistic people. And while this isn’t often talked about, there’s also something interesting to note about the non-verbal group of autistic people. We call them non-verbal and not mute for a reason. Although we often talk about not speaking when it comes to selective mutism, it does extend beyond this in every other person I have met with selective mutism. There’s true muteness, meaning not making any sounds. When it comes to non-verbal autistic people, the way they communicate is in many cases by sounds, even though it’s not actually through speech.

This is also where you will find the difference between the 2 conditions when looking at it closely enough. As just take me as an example, I am writing a blog here while we’re in the age of vlogs. I have often received messages that this is weird, especially at my age. For clarity, I am not able to do vlogs. It’s the same way as I never do face or even voice calls if I need to participate through similar means. It happens to be 1 of the social situations where my selective mutism triggers. I have tried in the past and it leads to panic attacks (and not a single word said). Hence the many excuses people have heard of me in the past why I can’t do it, close to never actually daring to just say openly that it’s because of my selective mutism.
Anyhow, this is exactly where the difference shows. As an autistic person reacts (pretty much) the same way regardless of the social situation. But someone with selective mutism does show very clear differences. I do talk a lot at home, for example, which is one of the reasons why I get along with my children so well, regardless of the lacking age gap. And I can write huge texts here and on my Facebook. But I get completely silent in other situations. In my case, I got started with my treatment way too late due to the mess of a life I had as a child.

Now, often the lack of understanding about selective mutism and autism is claimed to be the cause of the DSM, psychologists, and psychiatrists. I do not agree and find this a very unfair stance. Admittingly, a lot of the misinformation does originate from works claimed to be by psychologists and psychiatrists. Whether they are, I don’t know. In many cases, there’s no actual doctor, psychologist, or psychiatrist referenced as the writer of the articles.

It’s like you could check the guide on selective mutism on the website of the Child Mind Institute, but you wouldn’t know who has written it. There’s no author stated, which is rather a big problem. You wouldn’t want to be prescribed medication by someone you never met, so why would you trust a piece of text you don’t know who has written it? The reality is that many people do believe this piece of text, as I have heard it echoed many times on the channels of autistic people speaking about selective mutism. And the big problem is that this text has misinformation in it. This starts already at the start when they note:
“Children with selective mutism (SM) are talkative at home but unable to speak in more public settings, including school.”
Just read back what I quoted from the DSM-5 to be aware of the fact that this is misinformation. And it’s sad that this happens, as a lot of other information they share is correct. Almost everything else I have stated until now has been stated on the website of the Child Mind Institute as well.

(Explanation: A person with selective mutism does not necessarily have to be talkative at home, as there are cases where the mutism is in fact shown in home situations as well, like when an unfamiliar person visits. And neither does it have to be the case that a school is a place where a person with selective mutism does show their muteness, as there are cases where the school is one of the few places the mutism is not shown. As with every mental health diagnosis, there is always a sense of uniqueness and it’s not a simple generalized picture.)

This wouldn’t cause as much of a problem if there wasn’t a typical response of people choosing specific parts to echo and ignoring other parts. Let me quote actually a good part of the previously stated article:
“While a communication disorder will be apparent in all situations, symptoms of selective mutism are only noticeable in specific social situations. Likewise, kids with autism will have problems interacting socially in all circumstances, not just around certain people or in certain settings.”
This is what I explained before in a much simpler way. And this part is completely ignored by the autistic people on YouTube that I have seen to be claiming to have selective mutism, which combines with another problem.

It’s typical in the United Kingdom and the United States, a practice known as “self-diagnosing”. In most/all of the European Union, including here in Poland, the only valid diagnosis is made by a licensed medical professional. So, if you want to be diagnosed with selective mutism, a licensed psychologist would need to test you and make this diagnosis. When it comes to at least the United Kingdom and the United States, this is apparently very different. Admittingly, I don’t know the exact systems in these countries, as I don’t care enough to investigate it, but I have heard claims that even a “school doctor” could make a diagnosis of selective mutism or any other psychological condition. And the claims of their self-diagnoses can be found everywhere online, as it happens constantly. This is made worse by the fact that many of the people educating their audiences about self-diagnosing have very simplistic ways of explaining conditions, by which almost everyone would fit the description. It’s the same nonsense as keeps happening with ADHD, people think that every hyperactive child has ADHD, even though most children are just hyperactive in general, and ADHD is about way more than hyperactivity.

Now, to be clear, some have both conditions, as I do have both myself. But it’s extremely rare. And in some ways, it’s a question still whether it’s truly a combination of autism spectrum disorder and selective mutism. In my case, my current psychologist admits that if I would need to lose one of the conditions in the future, it would be my autism diagnosis and not my selective mutism. But autism is just more accepted than certain other diagnoses.

Just think about this for example: do you know what reactive attachment disorder is? You probably don’t, until I say “autism among foster children” or “autism among adoptable children”. Reactive attachment disorder is the most notable of all conditions that often gets incorrectly called autism. It’s what I have seen happening time and time again even by charities active in the subject of foster care and adoption.

Or how about the so-called extreme increase in autistic people in recent years? Interestingly, intellectual disability sees the same extreme drop in numbers as autism spectrum disorders see an increase. And psychologists and researchers have confirmed that this has to do with intellectual disability being more stigmatized than autism. If you have an intellectual disability, you’re often seen as less. And beyond that, it’s often incorrectly believed that autism spectrum disorders are treatable, which they are not.

The constant struggles and stigma

Having the condition of selective mutism can be extremely difficult. Our society is focused on mutual participation. Everyone should do their part and such. However, when you can’t speak, what should you do?
I am lucky that the situations I come across where I have problems speaking and am alone are really rare. But this doesn’t change the fact that there’s little to no awareness of conditions like selective mutism. And there are few resources to even help you create awareness.

As it might be good to take specific attention to the fact that I am an adult. Go to almost any source about selective mutism and it’s all about children. There are only very few sources, like the American Speech-Language-Hearing Association, that clearly states the fact that selective mutism is not exclusive to children. However, even the ASHA fails for classifying selective mutism as a childhood disorder. Neither the ICD-11 nor the DSM-5 states this, only calling selective mutism an anxiety disorder, and specifically, the DSM-5 gives attention to the fact that there’s not enough data about selective mutism among adults. Furthermore, the ASHA claims that selective mutism appears to affect more females. However, the DSM-5 very clearly states that the prevalence of selective mutism does not seem to vary by sex or race/ethnicity. And there are numerous other discrepancies, like the 1% claim supposedly of APA, which is in fact clearly stated by the APA to be between 0,03% and 1%, a rather huge difference from what the ASHA states on their website.

When it comes to mental health conditions, selective mutism included, there’s such a need for proper information to be readily available. But that’s the problem, there isn’t. The few times when the information is fully correct, it’s still useless due to the extremely difficult way it’s explained, requiring you to have a dictionary at hand to ever understand partially what is said if you aren’t a medical professional. For people educated to diagnose a communication disorder in me, it’s so sad to see that they technically even lack skills in this area themselves.

This is probably best where I end this blog post. As while I have written so very much, selective mutism isn’t truly that hard when simplifying it. Because selective mutism is a condition that causes a person to be mute in some social situations due to fear. That’s eventually all that there is to it. And how it truly affects my life… I think it’s best to keep reading my blog to understand, as telling about my day will make this much clearer than I ever could in a format like this. Which happens to be literally what I will be sharing in the upcoming days. So, stay tuned.