‘I struggle to talk but dream of being on stage’

BBC

Scarlett first showed signs of selective mutism at the age of five, and was diagnosed three years later.

A 15-year-old girl with a condition that makes it hard to talk says she wants to fulfil her dream of performing on stage.

Scarlett, from Flintshire, has selective mutism, a severe anxiety disorder that leaves people unable to speak in certain situations and left her off school for two years.

Along with Lucia, 17, from Swansea, she said a lack of awareness and understanding about the condition could make things worse.

About one in 140 young people are affected, according to NHS estimates.

Understanding Selective Mutism

The NHS says that a child or adult with selective mutism “does not refuse or choose not to speak at certain times, they’re literally unable to speak.” The expectation to talk to certain people triggers a freeze response with feelings of anxiety and panic, and talking becomes impossible.

Scarlett describes herself as “really chatty” and someone who loves musical theatre, but she can feel overwhelmed with anxiety around other children in school.

She shared, “I’m just constantly thinking ‘what is that person thinking about me?’ And then you’re like ‘I’m just not going to say anything’.” At the age of 13, she stopped going to school and did not return for almost two years. She expressed, “Not many people know about it; you can feel quite lonely and isolated most of the time.”

Sarlett’s parents say they have seen a lack of understanding of the condition, even from psychologists.

Sarlett was diagnosed with selective mutism at the age of eight, although her parents, Steve and Emma, believe she started showing signs as young as five. “It’s been a really long time of struggles and appointments, referrals and just not being settled really, and not being very happy in that time either,” said Emma.

The couple described visiting a wide range of professionals, from psychologists to hypnotherapists, with no results. “I spoke to somebody once that they’ve been in the profession as a psychologist for 25 years, and they said I probably knew more than they did, so that was a bit of a worry,” Emma added.

Symptoms of Selective Mutism

Selective mutism can start at any age but most often begins in early childhood between the ages of two and four. The primary sign is a marked contrast in the child’s ability to engage with different people, often resulting in a stillness or frozen facial expression when interacting with those outside their comfort zone. Experts regard selective mutism as a fear or phobia of talking to certain people, and while the cause is not always clear, it is associated with anxiety. A child can successfully overcome selective mutism if it is diagnosed at an early age and appropriately managed.

Scarlett’s dad Steve shared that dealing with the lack of understanding from others has been challenging. He noted, “She is very talkative, outgoing, very social, and she wants to do what every other boy and girl her age is doing: basically, going to the shops, going to the cinema. The selective mutism, over the years, has stopped that.”

Lucia says she feels stuck unable to move on while her friends head to college.

For Lucia from Swansea, selective mutism also creates barriers to attending school, college, or securing a job. “It’s really hard because it feels like everyone else is moving on with their lives, and I’m just stuck doing nothing,” she remarked. She has experienced moments where her planned conversations just vanish, leading to frustration and sadness. Lucia expressed her desire for normal conversations yet feels hindered by her condition.

As an established speech and language therapist, Anita McKiernan pointed out that poor awareness and understanding of selective mutism has persisted for decades. She noted recent improvements, having seen more resources and specialist therapists over the past five years. However, she stressed the need for more training among educators to identify and manage the condition, asserting, “The entire early years in school workforce also need to be trained in how to identify and effectively manage selective mutism.”

The Welsh Government expressed commitment towards enhancing support for children with communication needs, stating, “Practitioners need to be upskilled to support children and young people with speech, language and communication needs and our Talk with Me delivery plan aims to achieve this.”

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