I was told I had Selective Mutism the moment that I had been diagnosed. However, being only five years old at the time, I didn’t have a clue what any of that meant. It was a name for whatever was stopping me from talking, but it made me none the wiser as to why it was that I was sometimes unable to talk. What I did know, was that I could never figure out why everyone around me seemed to think that I was choosing not to talk.
It wasn’t until I got older and I began to say the words Selective Mutism to myself, trying to work out what it meant, that I realised why everyone had thought that it was my choice for all that time; the word selective, was suggesting that I was choosing to be this way. This led me to believe that for all that time, I had been given the wrong diagnosis. I didn’t know much about the reason why I couldn’t talk, but one thing I knew for sure was that none of this was my choice in any way at all. All I ever wanted to do more than anything else in the world was to talk just like everyone else. So comments from other kids such as, “She can talk, she just chooses not to” were the most heartbreaking thing for me to have to hear every single day. Everyone believed that it was my choice to be silent, whilst inside I was trying so hard to scream at the top of my voice and tell them that I was trying so hard to talk every single day, but nothing would ever come out.
Selective Mutism is a social communication anxiety disorder, not a choice to remain silent like many people may think. There have been far too many times that someone has been told that I have Selective Mutism and they’ve come up with a response such as, “I’ve never heard of that, but I’m sure from the name I could guess.” People with SM have a hard enough time trying to get people to understand that their silence isn’t a choice because of the fact that they are perfectly capable of speech in some situations, but never say a word in others; the fact that the name is Selective Mutism, makes the battle of trying to get people to understand this even harder.
Selective Mutism has had 3 names in total over the years; Aphasia Voluntaria, Elective Mutism and its current name, Selective Mutism. What I want to know is, why have all the names it has ever had suggested that Selective Mutism is a choice? When it was changed from Elective Mutism to Selective Mutism, it was thought to be a more accurate description for this disorder, however, I disagree. To me, selective and elective have very similar meanings. Selective Mutism suggests that the sufferer can select when they do and don’t want to speak, and Elective Mutism suggests that the sufferer can elect when they do and don’t want to speak. In my opinion, the only thing that really changed when the name was changed from Elective Mutism to Selective Mutism was an S being added to the start of the name.
Although the name change itself wasn’t much of an improvement, there were some positive changes that came from it. The definition was changed. Whilst it was still called Elective Mutism, it was described as a continuous refusal to speak in almost all social situations despite normal ability to speak. When the name changed to, Selective Mutism, it began to be described as a failure to speak in certain social situations. Furthermore, the DSM-5 moved Selective Mutism from the section of, “Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence” to the section of anxiety disorders. Things are improving as far as Selective Mutism being recognised as a genuine and severe anxiety disorder, but there is still a long way to go as far as trying to get many people to understand that Selective Mutism is not an attempt to try and take control, but rather a severe anxiety disorder that physically stops them from being able to speak due to how severe the anxiety is.
I believe that one of the first steps that need to be taken for Selective Mutism to finally be taken seriously is a name change. When people are informed of Selective Mutism for the first time, the name will be the first thing they hear and the most important thing when it comes to anything is getting that first impression right. Due to the fact that Selective Mutism can be extremely hard for some people to get their head around, I believe that whatever the new name was to be, would have to have some sort of explanation about what Selective Mutism is, in the name.
One name that has always stuck with me as the one that I believe would fit best has been, Situational Communication Anxiety Disorder. I’m not entirely sure the name should have the word mutism in it as although the mutism is a very large part of the disorder, it is not just talking that would create anxiety for the sufferer in certain social situations, but rather anxiety about communicating in certain social situations. I’m also not entirely sure that the name should have the word social in it as this suggests that it happens in all social situations; this is not the case as there are many people who suffer from Selective Mutism that are able to talk perfectly fine in certain social situations even if they are in big groups. It is a communication anxiety disorder that happens in certain social situations and that is why I believe that this name would fit best. Regardless of what the name change ends up being should there be a name change, is that it definitely needs to have the word anxiety in it.
Situational Mutism is also a name that many people have expressed interest in. Since Situational Communication Anxiety Disorder is a bit of a mouthful if you try and say it out loud, Situational Mutism could then be a good alternative. I do feel as if either of the names would definitely be a drastic improvement from what the current name is.
Whereas I know that going about a name change would never be easy, I do believe that it needs to be one the first things that we need to work towards doing if Selective Mutism is to be taken seriously by everyone. There are far too many times when people will look at the name and then decide for themselves without ever being educated about what it really is that it’s when someone chooses to be mute. As someone who has suffered from Selective Mutism for over 20 years, I know this battle all too well. Far too many times have I had to put so much energy into trying to get people to understand that Selective Mutism is anything but a choice.