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

A 15-year-old girl with a disease that makes it difficult to speak says she wants to fulfill her dream of performing on stage.

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

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

The NHS estimates it affects around 1 in 140 young people.

The NHS states that children and adults with selective mutism “do not refuse or choose not to speak at certain times; they literally can’t speak”.

“The expectation of talking to certain people causes a freeze reaction with feelings of anxiety and panic, making it impossible to talk.”

Scarlett describes herself as “really talkative” and someone who loves musicals, but she can feel anxious and overwhelmed when she’s around other kids at school.

“I’m always thinking, ‘What does that person think of me?’ And I’m like, ‘I’m not going to say anything,'” she said.

“I think your mind is saying, ‘No, don’t say that.'”

At age 13, she stopped going to school and did not return for almost two years.

“Not many people know this, and most of the time it can feel very lonely and isolating,” she said.

Scarlett was diagnosed with selective mutism when she was eight years old, but her parents Steve and Emma believe she started showing symptoms when she was five.

“I struggled for a really long time, getting appointments, getting referrals, and not being able to settle my case, and I wasn’t very happy during that time,” Emma said.

The couple said they visited a wide range of experts, from psychologists to hypnotherapists, but with no results.

“I once told someone I’ve been a psychologist for 25 years and they said I probably knew more than they did, so I was a little worried,” Emma said. added.

selective mutism It can begin at any age, but most often begins in early childhood, between the ages of two and four.

The main signs are a noticeable contrast in a child’s ability to interact with different people, a sudden pause or hardened expression when talking to someone outside of their comfort zone.

Experts consider selective mutism to be a fear or phobia of talking to certain people, and its cause is not always clear, but it is associated with anxiety.

If selective mutism is diagnosed at an early age and properly managed, the child can successfully overcome it.

Scarlett’s father, Steve, said it can be difficult to deal with a lack of understanding from others.

“She’s very talkative, she’s sociable, she’s very sociable, and she wants to do the same things that other boys and girls her age are doing, which means basically going to the store, going to the movies. It means going to the museum.

“Selective mutism has stopped it for many years,” he added.

For Lucia, from Swansea, selective mutism has also prevented her from going to school, university or getting a job.

“It’s really hard. It feels like everyone else is moving on with their lives and I’m just stuck doing nothing,” she said.

The 17-year-old said she had been planning conversations in her head, but her voice had completely disappeared.

“I’m just standing there with my mouth open, and all I really want to do is cry. I want to have a normal conversation with people, but the words just don’t come out,” she added.

She has tried numerous treatments with limited success and is worried about her future.

“It’s been really difficult because people don’t know about this and don’t know how to help,” she added.

Anita McKiernan, a specialist speech therapist, said for decades there had been a lack of awareness and understanding of the condition.

She said more research and more specialist therapists meant the situation had “improved significantly” over the past five years, albeit from a “low base”.

Ms McKiernan, consultant on selective mutism for the Royal College of Speech and Speech Therapists, added that although the condition is considered rare, it is relatively common, especially in pre-school children.

“All school staff need to be trained in how to identify and effectively manage selective mutism, because they are on the front lines of developing selective mutism. There tends to be a delay because you might be thinking, “Then grow up,” she said.

The Welsh Government said: ‘To support children and young people with speech, language and communication needs, healthcare workers need to be upskilled and our Talk with Me delivery plan will help achieve this. We aim to do so.”

“We are also developing resources for parents and staff to provide universal and targeted support for children with selective mutism.”