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Selective mutism: ‘People think I’m rude but I’m frozen with fear’

When Daisy-Mae was growing up her family thought she was just shy, but her crippling silence around strangers was actually selective mutism.

The anxiety disorder leaves the 12-year-old from Essex unable to speak to almost anyone but her parents.

The NHS describes how selective mutism triggers a freeze response in certain social situations, with those affected experiencing anxiety and panic.

While it has left Daisy-Mae unable to make friends, she has found a love for performing through dance and online videos, which allow her to express herself and feel empowered.

In an interview conducted via email, she explained in her own words how the condition impacts her daily life.

Imagine going through every day, mixing with people and your body is there but your mouth cannot move and you are so worried that you have no words in your head – it is just empty.

You are watching everyone else talking but you cannot – you are stuck. You cannot even ask where the toilet is if you need it.

That is my life with selective mutism.

I just cannot find the words and outside of the house, even if I can think of them I get very scared and freeze.

You cannot ask for help for anything, you cannot laugh or chat.

People think you do not care and you do not want to be friendly. You look unfriendly. It is like I am not in the same world as everyone else.

I am on my own.

I do not have any friends at all. I say I do not want friends and I want to be on my own.

But I see friends together and I think I like the idea, but cannot talk to anyone so it would be impossible.

I cannot talk to family either. I get very tired after I have been with people.

When I was performing in pantomimes last year I was in a different changing room to my mum. The other girls were playing games but I could not join in, so I was sat on the sidelines.

Because I cannot talk or join in, I just end up watching.

I can do impressions of people really well, so I can describe all the conversations to my mum when I get home.

I remember what everyone was saying – they think I am not interested but I am.

When I am performing, it is different. I still cannot talk but I feel like I have power.

It is the only time I can look like I can do something, to be part of a show with everyone else. It is not just me on my own.

I like being with people and performing with a big audience. There are a lot of people but they are not expecting me to talk to them, and I know what I have rehearsed and feel confident.

I like the music and I have to wear earplugs, but I like the audience smiling and clapping and having them watch me. I can smile then. I am different.

Earlier this month I held a charity talent show called Uniquely Me. I managed to make a short speech after weeks of practice.

I wanted to set up a talent show to especially give other people like me a chance to perform, so everyone whoever they are can be included and do not feel left out – as I often feel.

The children were all from different backgrounds, cultures and had different disabilities and everyone was happy together.

I’m so happy it went so well and that I could make people aware of selective mutism and I want to do it again.

Nobody understands what selective mutism is. They just either make a big fuss that I am not talking or leave me out completely and give up.

I wish I could explain that I am not unfriendly and I like people.

I want to wear the lanyard around my neck that says I have selective mutism and for people to understand what that is, like they would with autism.

I have tried learning sign language but I find that hard as when I am frozen in front of someone, I cannot move my arms or anything.

I do not worry about the future much as I am autistic. I find it difficult to talk about or imagine the future so I do not think a lot about it, but I know Mummy worries a lot.

Louise, Daisy-Mae’s mum, says she received letters from other parents after the Uniquely Me show to say how it had helped with their children’s confidence.

I worry about the future every single day.

Daisy-Mae relies on me for everything. It is very hard when you see your daughter cannot go and ask for a simple thing in a shop, she cannot be left alone as she would not cope in an emergency.

She has never been on a playdate or sleepover, she would not be able to ask for something anywhere or let her needs be known.

I worry that if something happened to me what would become of her?

As told to Rachael McMenemy

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