October, I recently discovered, is Selective Mutism Awareness Month. Given that selective mutism is a condition that has quite a significant impact on my close family, I felt I should produce something that helps in some way to spread that good ol’ awareness. Especially as it’s a condition that often leaves those who have it, and those who support them, feeling isolated and ignored. So.
“What’s selective mutism?” I hear you cry.
On one level, it’s pretty easy to explain. While in some situations they will be able to talk freely, a person with selective mutism (SM) will, in certain social settings (for example school, work, shopping centres) find themselves unable to talk. That’s it. There’s no choice in the matter – the vocal cords simply freeze up, and the words don’t come out.
However there’s also another aspect to it, which is I think why some people are starting to call it ‘selective communication’ – which is that a person with the condition can also sometimes find it difficult to communicate in other ways, such as through writing or messaging.
There is also the possibility that a person with the condition can suffer from progressive mutism, which essentially means they are no longer even able to talk to the people they are usually able to talk to, which is an incredibly difficult place to be.
I’ve read various stats on the prevalence of SM, and the latest was that about 1 in 140 people in the UK live with it. That’s much higher than I ever imagined. It can be accompanied by autism or autistic traits, but isn’t always. It is most definitely possible to manage an independent adult life if it’s properly identified and the correct measures put in place at an early stage. Sadly, as very little has been known about the condition until quite recently, this is not always provided. At least now the NHS has a web page with some information about it.
One of my own children has SM, and our experience has been that while it was manageable during primary school, the transition to secondary school was incredibly difficult, a situation that wasn’t helped by unexpected and poorly-managed staffing changes. Things have had to get really quite bad – including a fairly long absence from school – before the the right help has been offered. And as any family knows who has gone through anything similar, a huge amount of time is taken up with making phone calls, writing emails and sitting in meetings, all while the person with the condition is frustrated with themselves and with the system. There are so many challenges to face in working through how to navigate the education system, and having heard a few other people’s stories now, not every school offers the kind of support that’s needed. Sadly, a lack of understanding in the school (or work) environment can often be quite damaging to a person with SM.
Earlier this year I discovered a group on Facebook called SM Space Cafe. It’s a closed group, as it consists of those who have the condition as well as those who care for people with the condition, so it’s important to keep it a safe space where everyone feels able to share what they need to. I would highly recommend it for anyone affected by SM, as it’s a very sympathetic and supportive community, and perhaps more than anything, means that you don’t have to go through any of your SM issues alone. If you’d like to find out more about SM but don’t feel qualified to join the Cafe, there’s also this Facebook page that is about raising awareness.
People with selective mutism may struggle to communicate in ways that most of us are used to, but this has no bearing on their other abilities. There are some very creative members of the Space Cafe, and below I’ve posted just a couple of videos that they have produced to help raise awareness. I remain in awe of those who can be so open and honest about their journeys with SM, so I hope you have time to watch and share.