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BBCA 15-year-old girl with an illness that prevents her from speaking says she wants to realize her dream of performing on stage.
Scarlett, from Flintshire, suffers from selective mutism, a serious anxiety disorder which leaves people unable to speak in certain situations and has left her out of school for two years.
With Lucia, 17, from Swansea, she said a lack of awareness and understanding of the condition could make things worse.
Around one in 140 young people are affected, according to NHS estimates.
The NHS says that a child or adult with selective mutism “does not refuse or choose to speak at certain times”, they are literally unable to speak“.
“Expecting to talk to certain people triggers a freeze response with feelings of anxiety and panic, and talking is impossible.”
Scarlett describes herself as “very talkative” and someone who enjoys musical theater, but she can feel overwhelmed with anxiety around other children at school.
“I constantly ask myself ‘what does this person think of me?’ And then you’re like, ‘I’m not going to say anything,'” she said.
“I think it’s your mind saying ‘no, don’t say that’.”
At the age of 13, she stopped going to school and did not return for almost two years.
“Not many people know, you can feel quite alone and isolated a lot of the time,” she said.
Scarlett was diagnosed with selective mutism at the age of eight, although her parents, Steve and Emma, believe she started showing signs from the age of five.
“It’s been a very long period of struggles, of appointments, of referrals, not really being settled, and not being very happy either during that time,” Emma said.
The couple described consulting a wide range of professionals, from psychologists to hypnotherapists, to no avail.
“I once spoke to someone about the fact that he had been a psychologist for 25 years, and he said that I probably knew more than them, so that was a bit worrying.” , added Emma.
What is selective mutism?
Selective mutism can start at any age, but most often begins in early childhood, between two and four years old.
The main sign is a marked contrast in the child’s ability to interact with different people, a sudden stillness or frozen facial expression when talking to someone outside of their comfort zone.
Experts consider selective mutism to be a fear or phobia of speaking to certain people. The cause is not always clear, but it is associated with anxiety.
A child can successfully overcome selective mutism if diagnosed at an early age and managed appropriately.
Scarlett’s father, Steve, said it could be difficult to deal with others’ lack of understanding.
“She’s very talkative, outgoing, very sociable, and she wants to do what all the other boys and girls her age do: basically go shopping, go to the movies.
“Selective mutism, over the years, stopped that,” he added.
For Lucia from Swansea, selective mutism is also a barrier to her education, university or employment.
“It’s really hard, because I feel like everyone else is going on with their lives, and I’m stuck doing nothing,” she said.
The 17-year-old said she plans entire conversations in her head, but her voice completely disappears.
“It’s like my mouth is open, and all I really want to do is cry, because I’d like to have normal conversations with people, but the words just won’t come out.” , she added.
She has tried many therapies but, with limited results, she worries about her future.
“It’s been very difficult, because people don’t know, they don’t know how to help,” she added.
Specialist speech therapist Anita McKiernan said there had been a lack of awareness and understanding of the condition for decades.
She said more research and more specialist therapists meant things had “significantly improved” over the past five years, albeit from a “low level”.
Ms McKiernan, the Royal College of Speech and Language Therapists’ adviser on selective mutism, added that the condition, although considered rare, was relatively common, particularly in preschool children.
“All early years school staff also need to be trained in how to identify and manage selective mutism effectively, as they are on the front line of detecting it, and delays tend to occur because staff may think the child will grow up if that is the case,” she said.
The Welsh Government said: “Practitioners need to be trained to support children and young people with speech, language and communication needs and our Talk with Me delivery plan aims to achieve this.
“We are also developing resources for parents and teaching staff to provide universal and targeted support for children with selective mutism.”
