SM Speech

The general public hear ‘selective mutism’ and automatically choose to decide that the person is choosing not to speak. But in reality, they are physically unable to speak – it’s an extreme anxiety disorder. To the majority of the general public, they’ll see it as nothing more than just two words. But for myself, and so many others, those two words describe our entire life.

Although, the cause isn’t clear of what causes Selective Mutism, in 1915 Walter Cannon described the physiological response to situations as ‘flight or fight’, but more recently scientists have added a ‘freeze’ response to it. With Selective Mutism, the whole body freezes in response to situations that they’re not comfortable in. A couple of generations ago, the ‘freeze’ response would have been helpful in situations such as the war, but in this generation, the ‘freeze’ response can control people lives – especially for those with Selective Mutism.

There isn’t a cause on why the freeze response causes people with Selective Mutism become unable to speak, but there is a reason why the freeze response happens. It causes an enlargement in volume of neurons in the amygdala, which makes it overactive. The sensory information from the person gets sent to the amygdala, which triggers a region of the forebrain, called hypothalamus. At the same time, adrenaline is released and activated. From this, the body naturally responds with the ‘flight, fight or freeze’ response.

So no, it isn’t a choice, but it shouldn’t be a way of life for so many. Isolated, exhausted, restricted, lonely, stuck and trapped are just some of the ways that people with Selective Mutism feel. You’re isolated away from everyone around you, even your own immediate family. Yet so many people have to have it as a way of life; whether its because they never got diagnosed, or they did get diagnosed but there was no support available to help them overcome it.

Around 1 in 150 children. 1 in 1000 teenagers, and 1 in 2400 young adults have to live it. Although this shows that it is possible for you to overcome it, not everyone is able to do so. Approximately, there are around 940 children in a primary school, therefore around 6 children in that school may have Selective Mutism; diagnosed or not. That means a lot more people have came into connect with someone with SM than they think. Some people with SM are able to communicate in other ways, such as writing or through sign language. But not all can, some can’t communicate at all. Everyone who has SM is different from another who has it.

It’s not something that we can just grow out of, and its not comparable to other phobias. We can talk perfectly fine in front of people who we are comfortable with. It’s not something that we’re choosing to do, and we’re not being rude. We physically are unable to speak.

Although in the recent years, the awareness for selective mutism has grown, the overall awareness for Selective Mutism is very low, and there is a lot of misinformation about the condition, such as its caused from trauma, or we’re just shy. Neither of these are true, there isn’t a reason why on why’re mute, although there is another condition (traumatic mutism) which is caused from trauma, and we’re not shy either. The misinformation about the condition can be harmful to those with it, since we can’t educate others all the time. Everyone hears these myths, as well as many others, and automatically assumes for them to be true, as well as believing that the ‘quiet child’ is always just ‘shy’ and not anything more.

It’s became normal for those with SM to be discriminated against, although it will never not hurt them, being discriminated against has always been something that has happened to them. Whether it’s from strangers, students, professionals, teachers, people that are suppose to be friends and health care professionals. We’re constantly being told stuff about our condition that isn’t true, but we can’t say it isn’t, so they believed that it is. “They’re being abused” “The parents are making them not speak” “Its anxiety” “The parents caused it” They’re all things that I’ve many times. I’ve gone to the hospital and they just say “it’s anxiety” but a couple days later, I’ve been admitted to hospital for several infections for what could have been prevented a couple days before. We want to talk. We aren’t scared of talking. We don’t want to be isolated away from the world, constantly knowing we’re not the same as others. Children shouldn’t have to sit in class, surrounded by everyone talking and them not being able to say a word, knowing that you’re always going to be left out. Although there isn’t a way for people to not have the condition, there are ways to help them not feel so alone in this world.

It is possible for someone with Selective Mutism to successfully overcome it, with no long lasting impacts, but for some, they end up going into adolescence and then adulthood with it, even if they have had support from an early age. Even if they did have support from camhs or healthy young minds, they often aren’t trained in selective mutism and don’t fully understand what it is, but will claim to have worked with many other young people with it but still expect us to be in a couple of weeks’ time.

At around age 5, I got diagnosed with Selective Mutism, that’s 11 years ago. I still haven’t overcame it but have been through countless of workers at camhs and healthy young minds – majority of them not working at all. I remember when I was around 6, and we had to do a piece of work on what we wanted to be when we grew up, I didn’t have that dream of what I wanted to be. My mind instantly thought of how I wouldn’t be able to get a job because I didn’t speak, and so I thought that being a librarian would be a good job since it was quiet and I wouldn’t have to talk. Now, 10 years later, I’m in my final year of secondary school having no idea what I will do after this next year. I’m in this position because of the lack of awareness there is about it, and all of the myths there is about selective mutism. The impacts of not overcoming selective mutism as you hit your teenage years and then your adulthood can lead to suicide – with less chance of overcoming it as you become more older.

We aren’t choosing not to speak. We aren’t choosing not to speak to relatives – and the chances of us never being able to speak to them before they die. We wouldn’t choose to get bullied by other students, strangers, teachers and health care professionals. We wouldn’t choose to be denied health care just for not speaking. We wouldn’t choose to be picked on in class and being asked a simple question like “What’s your name?” and not be able to answer. We wouldn’t choose to be uncertain about our future, about whether we will get a job or not, or if we will ever make it that far. We wouldn’t choose to be discriminated against. We wouldn’t choose to not have a voice at times. We wouldn’t choose to be isolated away from everyone- the world. We wouldn’t choose this way of life… no one would.

Teachers, students, health care professionals, social services, healthy young minds and camhs, and the general public… educate yourself, educate everyone around you. You are going to meet at least one person with selective mutism in your life, whether they are diagnosed or not. Not everyone who is labelled as ‘shy’ or ‘quiet’ is just going to be shy, it could be selective mutism. Whether they have it or not, it’s not right to belittle and discriminate against someone just because they don’t talk. Make whatever you can accessible for those who can’t always communicate. Make more than one way to do things, or make more than one way for them to be able to communicate to you. It’s the little things that help someone with selective mutism feel less alone.

Don’t force someone with selective mutism to answer you. You wouldn’t force someone who is in a wheelchair but can walk a few steps, to suddenly start running. Why? Because its unrealistic that they are going to run. So why do people think that someone with selective mutism is suddenly going to start talking to you? Because of the name? Because of the lack of awareness? Because they’ve never met someone else with it so they don’t think its real? Because its ‘attention seeking’? Or is it all of those reasons, or one that I just haven’t named? I guess I’ll never understand why someone thinks that we’re suddenly going to start talking, but I guess that’s because I’m the one with it and so I don’t understand. But what I do understand is it can take many years for someone with selective mutism to talk to one person. Pressuring someone with it, isn’t going to help but it may make it worse. Overtime, pressuring someone to speak with selective mutism may make them develop progressive mutism. This is developed from negative reinforcement and misunderstands, and makes the person become fully mute, even in situations that they used to be comfortable speaking in.

There’s many ways on how you can help to support someone with selective mutism. This can include letting them know that there is no expectation to talk and to try to make them as comfortable as you can (whether that’s if they would like the silence or would rather it be filled, or if they want to be alone or with somebody). It can also include letting them tell you, their success stories, even if they are really small and you don’t understand why they’re so happy about it. Or even if they can’t talk, there are many different ways you could communicate with them, so try to find one that they’re comfortable with so they still can communicate even when they go mute. But remember, everyone with selective mutism is different, so they won’t all prefer the same thing. People with selective mutism will appreciate everything to help them feel less alone.

Please stop expecting us to adapt to everything, to adapt to being discriminated against by people of all ages and then expect us to do nothing about it, thinking that you’ll get away with it because ‘we never talk’. Stop expecting us to live our lives isolated away from the world. Although, we may not always be able to speak, we always will have a voice, its just how we communicate it across which is different. Just because we’re mute, doesn’t mean that we can’t hear and that we don’t have feelings – we often take in things a lot more than others do. We’re humans just as much as anyone else is.

Having selective mutism shouldn’t have to be a way of life, but it is for so many. Please help us break the silence; educate yourself and others around you.