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My son had to find his voice due to selective mutism


Fiona O'Leary was able to get her son Vito help early on when she saw he was having difficulties at play group

Fiona O'Leary was able to get her son Vito help early on when she saw he was having difficulties at play group

Fiona O'Leary was able to get her son Vito help early on when she saw he was having difficulties at play group

Alice had always been a very shy child. When she was very young, she would often cover her face when people spoke to her. Alice's mum, Miriam, had also been a very shy child, and it had made her childhood difficult. She didn't want that for Alice.

"I brought her to the playgroup and things like that because I didn't want her to be the way I was as a child, which was really nervous," says Miriam.

Alice was almost three when she started playgroup. The staff would often tell Miriam that Alice was very quiet. She was also quiet at home, so Miriam thought nothing of it. It would be quite some time before the mum understood what the staff meant by "quiet". In 18 months at the playgroup, Alice hadn't uttered a word to anyone.

"She'd never spoken. I didn't know what it was. They didn't know what it was. I started panicking. I didn't know what to do."

Miriam contacted the public health nurse, who told her: "She'll grow out of it. Don't worry about it."

But Miriam did worry about it. About six weeks later, she came across an article in a newspaper about a boy in England with symptoms so similar to Alice's that she was convinced they had the same condition. The boy's condition was called 'selective mutism'.

The condition is an anxiety disorder that prevents children from speaking in certain social situations. It usually begins in early childhood when the child first starts to interact with people outside of the family, such as school. Many children don't speak when they first start school or nursery, but with selective mutism, the condition continues indefinitely and affects a child's ability to communicate and learn. It's important to note the child is not voluntarily refusing to speak - the child is unable to speak in these situations.

It's a rare condition, but it may not be as rare as it's believed to be. A 2010 study of the prevalence of selective mutism found that, in a sample of 11,000 pupils at 39 Irish schools, 0.18pc of the pupils had the disorder. While this seems small, it was more than anticipated, and suggests selective mutism may be a hidden problem.

The study, led by Dr Louise Sharkey and Professor Fiona McNicholas, collected data on those children with the condition. They found that four times as many girls as boys had the condition, and that 71pc of sufferers were the eldest child in their family.

The data also provided some clues as to those most at risk of developing the condition. All of the children had at least one parent who was described as "very shy", half of them had a family history of social anxiety disorders and, while some other studies found no link between autism and selective mutism, this study found that 43pc of the children had a first-degree relative with an autism spectrum disorder.

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Vito O'Leary had such a background. "I already had a child with autism," says his mother Fiona O'Leary. "And with Vito, I was always keeping my eyes open, just in case. But he seemed to be developing perfectly well."

When Vito started at the local playgroup, Fiona and her husband noticed he wasn't mixing with the other children.

"I didn't take much notice of it, at first," says Fiona. "I just thought he was shy, and lots of children are shy."

The teachers also found Vito to be very quiet, and he wouldn't answer their questions. But quiet doesn't really describe what was happening to Vito. He was terrified. When he needed to go to the toilet, he was too afraid to raise his hand and ask.

"He would hyperventilate. I was so concerned at his anxiety levels that I thought it was too much for him. If it didn't change, I was going to take him out of school."

Fiona looked for help. Vito was initially diagnosed with Asperger's syndrome, but Fiona felt there was more to it. Further examination uncovered his selective mutism.

"There's very little understanding. I found that, as a parent, I knew just as much about selective mutism as many of the professionals," she says.

Despite being an incredibly debilitating condition, selective mutism is treatable. However, the efficacy of the treatment depends on how early the mutism is diagnosed, whether the child has any other language difficulties or anxiety conditions, and the coordinated efforts of parents, teachers and medical professionals.

"You need to tailor the treatment to the individual child and their needs," says Dr Louise Sharkey, consultant child and adolescent psychiatrist at the Mater Child and Adolescent Mental Health Service. "It's not one treatment fits all. It needs to be individualised to the child and their family. Every child needs to be seen as different."

According to Dr Sharkey, it's essential that parents and teachers have a good awareness of the condition. Doing or saying the wrong things can have serious consequences.

"It's important parents and teachers know what they're dealing with and they know how to handle it, so that they're not trying methods to encourage the child to speak that increases their mutism and their anxiety.

"And that's what happens when you have parents or teachers bribing the child - or punishing the child."

When Alice moved into the junior infants class, her new classmates and teachers began asking her why she wasn't talking. For Alice, this was unwanted attention and her condition worsened - following this, Alice would speak only to her parents, grandparents and her brother.

To avoid causing further harm, parents and teachers need the help of professionals - such as child psychologists and speech and language therapists - with experience of selective mutism. But this isn't always readily available or affordable. Both Fiona and Miriam struggled to get help.

Fiona was told about a UK speech and language therapist called Maggie Johnson. Maggie specialised in treating children with selective mutism and had developed a manual for professionals, teachers and parents. Fiona contacted Maggie for advice and bought copies of the manual for her and the school.

Together they followed its step-by-step approach to dealing with selective mutism. Some of the little things in the manual made a huge difference. For example, Vito now puts a shell on his desk to let the teacher know he needs to use the toilet.

Miriam and her husband felt they had to go private to get the help Alice needed.

"It was financially draining, but the public system is very, very slow, and early intervention is key," says Miriam. "You could be waiting for over a year to see a psychologist in the public system. I wanted Alice to be seen before she went to primary school."

Alice and Vito are lucky as they both have parents who recognised something was wrong and that action was needed. But many parents are unaware that there is a problem.

They're not bad or negligent parents, they just believe they have a very quiet child. But, by failing to recognise the condition, many children's struggle will continue into adulthood, and may lead to other anxiety disorders. According to Dr Sharkey, one study found that 61pc of those who didn't receive treatment still had communication difficulties 12 years later.

"There's also a risk that children will develop social phobia and other anxiety disorders in adulthood if they don't receive the necessary intervention," she says. "Early diagnosis and treatment will prevent adverse consequences. Some children can grow out of it, but I wouldn't recommend that you wait and see."

There are various things parents and teachers should be watching out for.

"When a child is out with a parent and a stranger says 'hello' and the child doesn't answer, or turns their head away, or doesn't make eye contact, or blushes, if in class a child is very inhibited and exceptionally shy, these are all signs the child may have selective mutism," says Dr Sharkey.

Helping a child overcome the condition takes time and effort and requires parents to unlearn a lot of what they know about parenting.

"It was really, really difficult for a long time," says Miriam. "I suppose we felt that people were going to be judgemental. Were we doing something wrong? Was it something to do with the way we were bringing her up? We now know it isn't. She's being brought up the same way as most kids. We provide a good life for her."

Alice is now seven-years-old. Though she's made a lot of progress, Miriam's worried about the future.

"She's not as anxious," she says. "She will speak to children she doesn't know. And she will speak to adults she doesn't know. But she won't speak to those who know her for not speaking.

"Other children have been really good. There's been no bullying, which is what I was afraid of. But she's only seven and that could change. When she gets older, children are going to be querying why she doesn't talk."

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