SELECTIVE MUTISM HELL

My Selective Mutism is the silent screaming.
On the outside, I am silent.
On the inside, I am screaming.

This is one small personal insight into my life with Selective Mutism. My life with fighting for control over my fear and speech.

I don’t know exactly when my mutism first developed. I don’t remember ever not being selectively mute. Being selectively mute was always my normal. I always thought that everyone was too terrified to talk sometimes, but that others were just stronger than me so they could control it. I thought that I was broken. I thought that I should be able to talk, because everyone else could, and nobody ever told me that I had a condition.

People told me to get over it a lot. To “just talk already”. I was mocked, pressured, ridiculed, and punished for not speaking. People always interpreted my mutism as me willfully not speaking. Probably because I rarely had speech anxiety at home, and didn’t have it everywhere, all the time. This is of course normal for selectively mute kids, and it’s why the condition got called “selective” in the first place – but people just don’t know or understand this. If you can speak in one setting, then they believe you not speaking in any other setting must be willful.

I frequently got branded as rude and arrogant. Other times I was misinterpreted as just being very shy, or embarrassed to speak. These accusations hurt me and made me angry, but I could not challenge them, because of my mutism. Which, to other people, just reinforced their assumptions of course – a vicious cycle.

I had a disabling condition throughout my entire childhood which I didn’t understand and was left completely alone with.

As I grew up, I lived in two worlds. In the Free World, I was strong, brave, truly myself – and, outside of autistic speech issues, speaking. In Mutism World I was terrified, frozen, lost – and often mute.

The Free World was outside of school, and away from the other select settings that triggered my Selective Mutism. Mutism World was family gatherings with people outside my core family. It was professional settings like doctor’s appointments. It was official social interactions like with staff in stores. But most of all, Mutism World was school. School was Mutism World hell.

I remember distinctly what being in Mutism World physically felt like back then. There was a sinking cold feeling in my chest. A sort of floatiness in my head, as if I had just awoken from a dream. Sometimes it was so strong that it felt like I was still dreaming.
There was my racing heart, but it felt different than during physical activity. Like my heart had been pulled further into the depths of my body. My senses felt as if there was an invisible barrier between me and the world. And everything was blurry and extraordinarily clear at the same time. Time felt like it was slowed down. I could feel the seconds pump away in my body. Dragging on like glue.

And then, of course, there was my speech. Or lack thereof. My words were stuck as thoughts in my brain. No matter how hard I tried, I could not make them move out of my mouth. My throat, tongue, and lips did not work anymore. Often I could not make any sound. And frequently I was so frozen that I was even unable to nod, shake my head, or move my body at all.

I remember what it felt like to go from the Free World into Mutism World and back again. I made that journey at least twice a day for years when I went to school in the morning, and when I went back home in the afternoon. I remember the transition from other settings as well, but school is especially clear.

My school had a red and white painted metal barrier that ran along the entire school grounds, separating the sidewalk from the street. It was rows of metal fence panels, the paint old and flaking off in countless spots. The fencing was there to navigate the students who went to school by bus safely into and out of the vehicles. It had gaps where the bus doors would be, wide enough for people to walk through, single file.

I went to school by bike. For me, the bus fencing was the border to Mutism World. Yet, as distinct as this border was, I didn’t consciously know this then. I am only understanding it now. My body felt strong, free, and alive while outside the red and white fencing. Even on my way to school, even though I knew what was coming.
In later years the school anxiety was constant, but it still didn’t take over my body and speech until I passed that red and white fencing. I was still okay even while crossing the street running alongside the school grounds. But as soon as my bike passed through the large open gap in the school bus fencing that led onto the schoolyard, I was in Mutism World.

Being in Mutism World didn’t mean I couldn’t ever speak at all whatsoever. It meant that the anxiety was constant. Having to fight to speak was constant. At any moment I could, and often would, become mute. Being in Mutism World meant a constant looming threat of becoming mute that I could feel inside of my body. It meant being in constant, ongoing distress.

School was one big Selective Mutism struggle (not to mention also being autistic). But the absolute worst of Mutism World was biology in 5th, 6th, and 7th grade – so that’s what I am sharing here.

My teacher in that subject had this thing: at the end of every lesson, he gave us several pages in our textbook to memorize until the next lesson as homework. Then at the beginning of the next lesson, he called one of us up to give an oral recitation of the pages. He then asked a bunch of questions about the content. This teacher called these recitals “repetitions”. Repetitions were graded, and a large part of our biology grade.

Most of us were scared to be called up for repetition. We all knew that every single one of us would eventually get called – but we never knew when it would be our time. That’s how the teacher kept us scared. How he ensured all of us memorized the pages he gave us every single time. When it was their turn, everyone recited whatever they could manage, and then answered the teacher’s questions as best they could. Everyone except for me.

Whenever I was called, I just froze. I could not speak. I was usually not even able to answer “Yes.” or “No.” when the teacher asked whether I was going to say anything, or whether I had studied or not. If I was lucky, I was barely able to shake or nod my head.

The dread I experienced while being questioned, with the entire class staring at me, and then the teacher teasing and mocking me, pressuring me to say something, threatening me with another F – it was indescribable. And then another F. Every single time.

I didn’t have a problem with getting good grades in written exams, but the Fs from my repetitions, combined with the Fs for my general oral participation (which was mostly non-existent due to my mutism), meant that I consistently got a D in biology while I had this teacher.

I had the same problem in all other subjects as well of course. My written grades were mostly As and Bs, but my oral participation was almost non-existent. Oral participation was at least 20% of all grades, and don’t even get me started on group projects and presentations. This meant that I always ended up with much worse grades than I deserved.

After several years of horror, I got a different biology teacher – and everything changed. My teacher-anxiety in biology almost completely disappeared. My grade improved from a D to a B. Even my oral participation improved, though my now formed school anxiety, my autism, and my still persistent Selective Mutism didn’t allow me to participate as much as I wanted and would have been able to otherwise.

I got older. I went to an athletic club every week which empowered me. In regards to my Selective Mutism, things improved quite a bit. I didn’t feel as intimidated by my teachers anymore. Instead of being scared of them all the time, I more often found myself angry at how they treated me. That anger helped.

I thought I was finally done with the hell of biology for good, but in 11th grade, I found out that my old teacher would be my teacher once again. That was not a good day. I was terrified. I thought about running away. I thought about killing myself. I made plans for both but ultimately couldn’t go through with either.

And then I got angry. I got angry at myself for being so weak. For being so scared. I got angry at this teacher for abusing his power to make my life hell. For all the times he had mistreated me in the past. For the fact that he was never going to get what he deserved, while I was still suffering – and probably would continue to suffer. And with that mix of fear and anger, I went back into class with him.

I knew that he remembered me. I knew he would call me up as soon as he saw an opportunity. I skipped school a lot back then because it was the only means of protection I had. I skipped biology as well, to avoid his repetitions. But I knew that I couldn’t skip forever. And so I finally got all my strength together and prepared.

When he gave us his nasty little pages to memorize, I did. I studied, I learned, I memorized. I practiced and repeated, over and over and over again. Until I was sure that I knew it. And just as I had expected, the first time I came to class twice in a row, he called me up at the beginning of the lesson, for repetition.

I knew that everyone in class remembered that I had never managed a word when called upon for repetition before. It was very memorable after all. When I glanced around with my head down, terrified, they were all looking at me. Of course, that didn’t help my anxiety.

It was silent. Completely silent. Usually, there were always some common classroom sounds. Someone blowing their nose. Someone writing something down. Someone adjusting their chair. Someone rustling with paper. But not while everyone was waiting for me to say something. It was surreal.

I felt my heart beating in my stomach. I felt the familiar emptiness in my head. The pulling in my chest. The blockade between my thoughts and my mouth. But I also felt that it wasn’t as strong as it had been years before. Instead, I distinctly felt the anger bubbling.

Then suddenly I spoke. The first sentence was a bit wobbly, but then my voice became firm. I recited the entire thing we had had for homework without looking up.

When I was done, I looked up. The teacher was looking at me. I felt like something was going on, but I was unable to read his facial expression. There was a moment of complete silence. Then he started asking me a couple of questions. I answered every single one of them.

When it was all said and done, the teacher praised me for my repetition and gave me an A-.

That was my Selective Mutism turning point. It was epic. I didn’t have many moments like this in my life. Just lots and lots of struggles and suffering. But this moment I will forever remember. I felt a rush of power in my body. I was strong. I was free. At that moment, I was unbeatable.

I wasn’t cured after that. I am still selectively mute today. But my selectively mute life definitely changed. That teacher didn’t scare me anymore. Other teachers also didn’t intimidate me as much anymore. My life at school was still hell, but my Selective Mutism became easier to live with.

I fought so hard to overcome my mutism. That time, and many other times. And I did it all by myself. I didn‘t have any support, private or professional. I didn‘t cure myself. But I did eventually manage to overcome my Selective Mutism in other settings as well. In some, it remained a problem.

I did and still do pay a steep price for my overcoming. My anxiety went unresolved. Due to additional circumstances, it eventually turned into a severe generalized anxiety disorder that has disabled me for years. It still disables me today. My self-esteem suffered greatly, and may never fully recover. And I was forced to drop out of school. I still wish to go back and get my degree to this day.

I still get Selective Mutism episodes. I am still disabled. I may want to agree or disagree with something, but be unable to. I may want to give or deny my consent for something, but be unable to. I may want to say or ask something, but be unable to. This has many negative consequences in my everyday life.

The biggest difference to my childhood is that I know what Selective Mutism is now. I understand what triggers it, why, and what I can try to do about it. I have ways of fighting back, calming myself, controlling my anxiety – and most of the time I can stop it from taking my words away. And when I can‘t, I am kind to myself. I accept it. I recover. There is no more guilt or shame on my end.

Today I don’t need much support with my Selective Mutism anymore, because I already helped myself through most of it. I have the understanding I need, and I pass it on to the people in my life who need to know. They support me by simply waiting until I can speak again and letting me use whatever communication I can manage. Strangers are a different story and I am definitely still at the beginning of my self-advocacy journey.

What struck me while remembering this, is that I always saw myself as weak during my bad mutism years. I thought I was weak for not being able to do what everyone else seemed to do so effortlessly. I didn’t want anyone to know that I had this problem. But thinking back to it now, that’s not true at all. I was so brave. Keeping on despite all the terror. I managed all of that all by myself. As a child and teenager. I was living with a debilitating anxiety disorder. I wasn‘t weak at all. Though I also realize now that even if I had been weak in any way I would have still not deserved my suffering. I would have still deserved the support I needed.

I do wish I had had the support I needed back then. I shouldn‘t have had to do this all by myself. Nobody should have to go through what I went through. Instead of needlessly suffering for years, with lifelong negative consequences, I could have been a happy and healthy human being.

My life would have been so much easier, had I known that I had Selective Mutism. Had I known what it is, what triggers it, and what I can do to help myself during an acute episode. Knowing would have allowed me to understand, to self-advocate, or have others advocate on my behalf.

I would have benefitted hugely from having access to alternative communication methods. From knowing that it is okay not to speak. That any way I communicate is just as valid as spoken language.

It would have helped if other people had been educated on Selective Mutism. If they hadn’t misinterpreted my suffering as willful non-compliance or a character flaw. If they hadn’t pressured, mocked, or punished me, but just accepted that I sometimes can’t speak.

Accommodations like not being called in class unless I raise my hand, or doing written participation instead of oral would have changed my life. Having the security of only having to speak when I feel ready and able would have made a huge difference.

Easing my anxiety back then would have likely prevented my long term anxiety issues – or at least minimized them. I could have probably overcome my Selective Mutism much easier, had my self-esteem been built up properly.

Therapy is often used on selectively mute children. Therapy that aims to get them to speak again. That is not informed by selectively mute people. That is often problematic, harmful, or just not helpful. I wouldn’t have benefitted from the therapies available, and I am glad that I was at least spared from being subjected to any.

I do wish I had had access to others like me. Finding community helps. Supporting each other through shared difficult experiences is a good thing. I highly recommend it to anyone experiencing Selective Mutism, or knowing someone who does. The loneliness and isolation I experienced were heart-breaking.

The teachers that bullied me needed to be fired. This doesn’t get said often enough, so I’m saying it: teachers who harm their students need to be fired.

I can be proud of myself. For surviving. For fighting back. For finding my strength.

Every single selectively mute person out there can be so very, very proud of themselves. It’s hard, but you are here. Others may never understand, but I do. People like us do. You exist. You are not alone. I hope you get the support you need, and that it gets easier for you.

If only someone had seen me. Really seen me. And cared. Things could have been different. But alas, I can’t change the past. These are memories now, and I am using them to help myself work through it and to help others understand. So that other selectively mute children (and adults) don’t have to suffer as I did.

We are all human beings, whether we speak or not.

• Allison 04.01.2021 at 12:09 AM Reply

  If you substitute theatre for sports, this could be me. I barely went to high school, I attended just enough to keep good grades, I’m oddly thankful for lazy teachers who just followed a text book. I didn’t understand it until recently, now it is entangled in trauma and I literally cannot ask for help when I most need it, but at least I know what it is, and what it isn’t. Well, intellectually I know, mentally I am still wading through the ‘if you really didn’t want this to happen, you would’ve been able to say no’