Motivational Speaker, Disability Law Expert
Daniel is a highly experienced accessibility consultant with extensive experience of disability. Daniel has particular expertise in acquired disability, including acquired neurodiversity.
He established the National Disability Employment & Advisory Service in 2022 and focuses on supporting neurodivergent young people & adults into employment.
Get in touch using my contact email above.
Cover photo by Kristina Flour on Unsplash
Other than being ‘spooky month,’ October is also selective/situational mutism awareness month! As someone with selective mutism, I would like to use this time to share my own story, so that I might be able to teach people about what it truly is, what it feels like and how I cope with it.
Selective mutism affects roughly around 1 in 150 young children in the UK - and that doesn’t account for adults or teenagers who still struggle with the condition. It is something that I find is often neglected in favour of discussing the overarching topic of social anxiety or neurodiversity; and, it is usually talked about as a condition solely affecting young children. But, as someone who experienced it throughout my teen years - and now officially into adulthood - I think it’s important to share my first-hand experience, so that I might be able to spread further awareness into the subject - since, is that not the point of a month dedicated to situational mutism awareness?
P.S: I will use both selective and situational mutism interchangeably in this post. While both terms mean the same thing, I understand that different people believe different words are more fitting when discussing this topic.
P.P.S: ALSO, I am definitely not claiming to be an expert in this subject! I have absolutely no formal training in any of the areas I’m discussing, I am solely talking about my own experience and others’ research.
Now… time to overshare on the internet in the name of ‘awareness'!
It’s not just ‘being shy’
This is a common misconception. Oftentimes, children who have selective mutism are simply labelled as shy - I know that I was! Whilst, yes, we are technically quiet (it’s called a form of mutism for a reason), there is so much more to it than that. Selective mutism is officially categorised as an anxiety disorder, where the individual feels an intense panic when it comes to talking to people within certain situations. People with selective mutism will be able to talk when we feel comfortable - for example, within the home, with friends or in 1-1 conversations, but we can lose that ability in particular environments. Usually, this includes places such as nursery, school, large social events, group conversations and even the workplace (something that can greatly affect chances of employment!).
My experiences in school…
For me, I have always found any sort of group situation overwhelming. This largely made school a challenge. I personally don’t remember my anxiety until I went into Year 4, at age 8. At that point, I had begun to develop severe mental health issues, including depression, anxiety and situational mutism - it’s key to note that my autism also remained undiagnosed here! Past this point, school became my living nightmare. I would dread waking up every morning and called in sick a lot. Whilst I was also dealing with other mental health issues, my selective mutism gave me a terrible fear of being called on by a teacher and would cause my anxiety to spike anytime I was in a lesson. My arch nemesis was the lollipop stick system, where teachers pull students’ names randomly from a pot of lollipop sticks when they ask a question, in order to encourage class engagement. Whilst done with good intentions, for me it felt like a colourful game of russian roulette every time a teacher began rummaging around in that jar.
Eventually, as my family and I began to gain help for my declining mental health, we were able to have discussions with teachers which involved asking them to stop calling on me. This accommodation continued in place after I moved up into secondary school, bolstered by my recent autism diagnosis. However, I found that some teachers still called on me. Although they likely did so for good reason - maybe they forgot, maybe they thought they were helping me to engage - it caused my anxiety to skyrocket even further knowing I couldn’t even trust teachers I had explicitly asked, not to force me to talk. This caused intense, nauseating panic attacks and even missed lessons as I chose instead to spend my time hiding in the school toilets or the library (if I was allowed!)
I found it easier to talk with friends 1-1 or in small group situations, but whenever I was tagging along around people I didn’t know, I tended to become a ‘fly on the wall’ outside of their interactions. If I didn’t know someone, I simply wouldn’t speak to them. Partly due to my selective mutism, partly due to my autism, I would just stand there awkwardly until my friends moved on - and hope people didn’t find my looming presence discomforting! Though, I still definitely got a lot of annoying comments from people: ‘Wow! I didn’t know you could actually speak!’ ‘I didn’t expect you to sound like that,’ or ‘Why don’t you talk much?’ I know that they came from a place of genuine curiosity and humour, but at the time it frustrated me to know that people actually noticed how different I was; especially as I was grappling with my recent autism diagnosis at the same time.
Even when I began to take lessons online, I still couldn’t talk to my tutors for the first 2 years - instead solely typing out responses within a given chatbox. But, through working with my speech and language therapist I was able to finish my GCSEs using the microphone to chat, and then went on to speak with my teachers for my A-levels - including lessons that involved other students whom I didn’t know.
Now, although I definitely still have selective mutism, it is significantly easier to handle. It is very rare when I find myself entirely unable to speak. Through a lot of time and work, I’m now in a position where I can communicate verbally even when found in new environments or when anxious - although I’m still very quiet! Some days it is harder than others, and I still often freeze when particularly anxious; but that doesn’t take away from how much progress I have already made!
It’s not just ‘refusing to talk’
People with selective mutism aren’t purposely refusing to talk to you because they can't be bothered or they don’t like you. When and where we can talk feels completely out of our control. And, it doesn’t mean we don’t have anything to say! I can’t tell you how frustrating it is to desperately want to engage in a conversation, but being entirely unable to form words.
What it actually feels like…
I distinctly remember a case in Year 5 where I was called on to answer a maths question. The teacher had asked the class, and no-one was answering. Knowing what was coming, my heart pounded within my chest as I silently prayed that she wouldn’t look my way. Then the teacher called my name. I couldn’t speak and so I sat there silently for a few seconds, frozen in fear, horrifyingly aware of the confused and concerned stares coming my way, shaking my head frantically in a desperate attempt to make some form of communication. She asked the question again to try and prompt something out of me, which just stung like salt in an open wound as I was reminded of my humiliating inability to engage in any way. Then I promptly burst into tears, and I honestly don’t remember anything past that moment. I felt so ashamed. Why couldn’t I just speak? What was wrong with me?
As you can imagine, it is not fun. Instead of simply ‘refusing’ to talk, my situational mutism feels a complete inability to get words out of my mouth. When I’m anxious, it is as though there is some sort of a barrier or blockage within my throat, which completely stops any attempt at talking. If that alone isn’t distressing enough, add on the fact that you have to be glaringly aware of it the whole time, along with the awareness of how strange you must look to those around you. So you can see that it’s not just a refusal to speak…
It’s not always a case of ‘outgrowing’ it
Whilst many children who have selective mutism when they are younger are eventually able to work through it with therapy, experience and time - it’s not always the case. Many teens and adults still struggle with the condition, so it is not just a case of ‘outgrowing’ your selective mutism.
Photo by Maël BALLAND on Unsplash
For myself, whilst my anxiety has gotten much better and I have found ways to work through my situational mutism, it is still very much present. When placed in unfamiliar environments or talking to people I don’t know, I still find it hard to get my words out.
How I cope with it (and still often ‘fail’)
Selective mutism is categorised as an anxiety disorder. This means that in order to improve it, you need to find strategies that will help you work through that anxiety. I am lucky enough to have found myself in many different forms of therapy, meaning I’ve heard and practised many different calming techniques. Some very common ones are as follows:
Breathing techniques. Focusing on and controlling your breathing has been shown to reduce anxiety. If you wish to try this, you could simply think about taking more deep, conscious breaths - or if you want more of a rhythm, try breathing in for 4 seconds, holding for 4 more then releasing it in 4 seconds, and holding for 4 final seconds.
Mindfulness practices. Finding ways to pay attention to the world around you rather than dwelling on your own internal feelings can be a way to pull you out of an anxiety spiral. The one I remember the best is the 5-4-3-2-1 method: looking for five things you can see, four things you can feel, three things you can hear, two things you can smell and one thing you can taste.
Simply ride it out. Sometimes when I’m anxious, the best thing is to focus on the fact that these feelings are only temporary. It is good to be aware that even though you are panicking now, after a while you will likely settle and things will be okay. Obviously, this is not always possible - anxious thoughts are hardly ever rational - but as you put yourself into more anxiety-inducing situations you begin to become acquainted with those uncomfortable feelings and you can be reassured that they will pass the more you practise. This is often one of the main premises used in exposure therapies. As a bonus: I also hated most mindfulness and breathing exercises growing up, so this was often the only option I had!
Finally, as a Christian, I will often look to my faith in difficult situations. I remind myself that in my weakness, God’s strength is made present. Before (and maybe even during!) situations where I expect that I might be anxious or expected to talk, I will pray and find peace in God. When looking at the Bible, I am strongly comforted by the story of Moses in Exodus: even he felt unable to speak to the Pharaoh, yet God gave him strength and sent his brother to speak for him. I always find this particularly interesting, because whilst God mentions that He will speak through Moses, when Moses’ fear persist, He sees that and accommodates accordingly, choosing to send Moses’ brother, Aaron, alongside him to speak for him - and having his brother’s support never diminished what he had to say. Having faith doesn’t get rid of my selective mutism, but I find that when I lean on God it is easier to find that level of comfort and peace which I need to be able to talk.
What can others do to help?
Understand that it is out of our control.
Please don’t be offended or expect us to be able to control (or even guess) when or where someone with selective mutism can speak.
Don’t put pressure on us to speak.
I can tell you that feeling pressured to say something only makes the anxiety worse. The best thing you can do for an individual with situational mutism is to reassure them that there is no need to interact verbally.
Don’t leave us out.
I understand that this is a fine line to walk, but wherever possible, provide ways to get involved without speaking. Simply acknowledging someone’s presence in a room or conversation by looking their way or saying hello can go a long way in making them feel included and comfortable. When working with children, finding a way to play without speech can be helpful in making them feel seen and accepted; and then in turn, comfortable enough to talk.
Find ways to comfortably ease people into new environments.
Touching on that last point, think about how you can make a new environment more comfortable for individuals. For a start, providing a level of structure or explaining what is expected to happen can be incredibly helpful. As well as that, know that it can take a while for a person with selective mutism to feel comfortable enough to talk and get involved - this could be a couple of weeks, months or even years.
I hope that after reading this you have a better understanding of selective mutism, how it affects individuals and what others can do to help.
I was supposed to have this blog post up last week, but I kept procrastinating finishing it off! On top of writing this, I have also been working on setting up an Etsy store as well as storefronts on sites such as Society6 and Redbubble where I can share my art for those who might wish to purchase it. Whilst not ready yet, keep your eyes peeled for any future announcements pertaining to either of these projects!
Follow me over on Instagram where I regularly post my art and can easily update you on future plans and fun endeavours!!
Thank you so much for your ongoing support!
Sincerely,
Owen @ ScribbleWhiskers
‘But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.”Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.'
2 Corinthians 12:9-10 ESV
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Organically grow the holistic world view of disruptive innovation
At the end of the day, going forward, a new normal that has evolved
Lorem ipsum dolor sit amet consecetuer lorem ipsum
Organically grow the holistic world view of disruptive innovation
At the end of the day, going forward, a new normal that has evolved
Lorem ipsum dolor sit amet consecetuer lorem ipsum
Organically grow the holistic world view of disruptive innovation
At the end of the day, going forward, a new normal that has evolved
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