The parents of Ellie Graham couldn’t understand it when their normally chatty daughter wouldn’t talk at school. Then she was diagnosed with selective mutism

ELLIE SEEMED to be like any other four year old starting “big” school. By day two she was independent enough to insist on taking the bus for the two-mile journey to the local national school from her home outside Lifford in Co Donegal.

So it came as a surprise to her parents, Gillian and Maurice Graham, when two weeks later her teacher rang to say there was a problem. Ellie was not talking.

She would not speak to the teacher or interact with the other children. At break time and lunch time she stood in the playground on her own.

The Grahams put it down to shyness and thought the issue would soon be resolved. Their eldest child had always chatted away at home, although they had noticed that when strangers were about she would not talk to them.

“To begin with we all thought she was being stubborn and totally refusing to speak,” says Gillian. “I suppose we saw it as a bit of defiance.”

Ellie did not make a fuss about going to school but when she got there each morning, “she walked like a zombie, trailing her feet on the ground”.

“Everybody was pushing her and saying, ‘Why are you not speaking?’ and ‘Will you speak tomorrow?’” recalls Gillian. “My mum even said to her, ‘I’ll buy you a bike if you speak at school’. She came home and told us she was speaking, and my mum went and bought her a bike, but she wasn’t speaking at all.”

It was much later that they were to find out that this was the wrong approach. In fact, they were making it worse by pressurising her.

On the teacher’s recommendation, the Grahams contacted the public health nurse who referred Ellie to a psychologist. Told she was on a waiting list for an appointment through the HSE and it would take some months, Gillian brought her privately to a psychologist.

“To be honest we made no progress at all. It was a man and Ellie would come round to women much quicker than men, and she never took to him. He wasn’t willing to make a diagnosis,” says Gillian. It was almost the end of Ellie’s first year at school before she got to see a HSE psychologist.

Meanwhile, Ellie maintained her silence at school, but reverted to her chatty self once she got into the car to go home. “It was non-stop, and if she had friends with her they were like ‘Oh my goodness’, absolutely shocked,” says Gillian about the transformation of their classmate.

Just before seeing the HSE psychologist, Gillian read an article in a magazine about a condition she had never heard of, selective mutism.

It was a complete revelation. Ellie had every symptom of the child featured in the article and Gillian was sure this was the problem. Further reading on a US selective mutism website strengthened her suspicions.

So by the time Ellie attended the HSE psychologist – a woman this time – Gillian was able to say that this is what she thought her daughter had. With feedback from the teacher and parents, selective mutism was soon confirmed and the psychologist started a treatment programme.

“We were not too concerned at the beginning. I think because she was totally normal at home it was so hard to understand or even believe this was happening at school,” Gillian comments.

“The psychologist said to me, ‘This is very serious and she could end up with more serious problems ’. That is maybe what we needed to really take it seriously and do what had to be done.”

It is estimated that between one and two children in 1,000 suffer from selective mutism, which is an anxiety disorder. It usually becomes apparent at school, but psychiatrist Dr Louise Sharkey believes not enough awareness of the condition exists among teachers.

“A lot of people put it down to shyness and say they will grow out of it,” she says.

As a result, it is at least two or three years before the child comes to medical attention, by which time the behaviour is entrenched and harder to treat.

Children who are shy will speak, but they do so in a quieter tone of voice than most and are slower to warm up. Whereas children with selective mutism just won’t speak in certain settings outside the home; they are very shut down and very inhibited.

“Selective mutism impairs a child’s ability to function academically and socially, whereas shyness doesn’t,” explains Sharkey, who works at the Mater hospital in Dublin.

It is really important that teachers know how to handle such children. “Often teachers try very hard to get the child to speak, but they actually increase the child’s anxiety and reinforce the mutism as a result.”

The disorder is still classified as “elective” mutism, but the name was changed to “selective” mutism in the US in 1994, to avoid implying that people with the condition choose not to speak when they find themselves in certain circumstances.

Sharkey’s interest in the condition was sparked by seeing identical twins with it some years ago. She has since been involved in writing research papers on selective mutism and publishing advice manuals for teachers and parents.

A study of schools in Dublin, which she conducted with fellow psychiatrist Prof Fiona McNicholas, found a rate of 0.18 per cent of children with selective mutism, which is in line with other research. But as they were relying on schools reporting it, this may have been an underestimation.

The hyperactive, disruptive children are the ones who tend to be referred for psychological assessment, not the silent child, Sharkey points out. Children with selective mutism can be extremely obedient, very precise and very good at writing and colouring.

“There is still a stigma about referring to psychiatry; teachers are reluctant to do it, unless they are really causing them trouble. Parents won’t either,” she says. “Parents will say to me time and time again that their child is normal, why are we going for treatment?”

It is a condition that has been found to be a lot more common in bilingual children; some studies would say it is up to four times more likely.

Advice to parents and teachers includes: not putting pressure on the child to speak; accepting and rewarding non- verbal communication and not putting the child at the top of the class – he or she is more likely to speak further back.

“We use a behavioural programme which is very gradual,” explains Sharkey. When the child manages to speak to one person within the school, usually the parent first, then more people are introduced into the speaking circle, and then the setting is changed.

“Every child is different and the treatment plan needs to be tailored to individual needs,” she stresses.

They may have other psychiatric conditions, whether educational or emotional.

“Two-thirds of them will have speech and language delay; two- thirds will have other neuro- developmental delay as well. It doesn’t tend to occur on its own.”

Sharkey advises parents who are concerned about the possibility of a child having selective mutism to talk to the teacher and find out how much the child is speaking in the classroom.

“Some children are shy and may speak a little bit, but if there is no speech at all and the children are behaviourally inhibited – lack of eye contact, blushing when spoken to – you should be concerned at that stage.”

A diagnosis of selective mutism would not be made until after the first term for children new to school and not until after the first month for children returning to school. If the condition is not treated, the children may grow out of it, but continue to have communication difficulties in adulthood.

“All these children meet the criteria for social phobia and if you don’t intervene and treat early, this will probably continue into adulthood,” adds Sharkey. “When these difficulties occur in adolescence there is a risk that children will start drinking or taking drugs in order to give them the confidence to cope.”

Ellie’s treatment started at the beginning of her second year at school. It began with the “sliding in” technique, Gillian explains. “I went to school every morning for about half-an-hour. Ellie and myself were in the staff room. She started whispering; the second day she started talking out loud.”

They continued that until a resource teacher started to work with them. The teacher would introduce herself, back out of the room and then very gradually come into the room and go out again, seeing if Ellie would speak.

“After a couple of days Ellie started speaking to her,” Gillian reports. “But it still continued in the classroom, that she wouldn’t talk with her teacher.”

Gillian believes it was Ellie’s self-consciousness of speaking out loud in front of all the other children that was inhibiting her. “It took until the end of her second year before she would talk freely out loud; she whispered for a long time.”

Willing to try anything, Gillian has also been bringing Ellie to a homoeopath who had said that children with anxiety problems do very well on certain remedies. She believes it has helped. “After the Christmas holidays, the teacher said whatever she’s been getting she is like a different child.”

Ellie, now aged eight, had been anxious about starting in the senior classroom of the two-teacher school this month. But, in fact, she is doing very well, her mother reports. Their younger child, a six-year-old boy, is also quiet and shy but has always been able to talk at school.

“I was quiet when I started school,” adds Gillian, who is keen to raise awareness of selective mutism. “I was very, very shy and I wouldn’t ask to go to the toilet and I wet myself every day. I probably had it as well, but I was in a bigger school and I probably blended into the background.”

• For more information see: www.selectivemutism.org

Silence in Class: Jade (15) likes school but is simply afraid to talk:

Jade Weldon (15) has never spoken in school, neither in her national school nor her current secondary school. There are also members of her extended family she has never talked to, including one grandparent.

Although she was referred to a psychologist and a speech therapist at the age of seven, her mother, Olivia, is critical of the lack of intervention.

“She never got any help at school, that was my main thing, that she should have,” she says. The teachers just seemed to accept her silence. “You would get the odd teacher who would take more of an interest than others.

“People did not take it seriously,” she suggests. “I was thinking that I was just being too overprotective.”

The second youngest of four children, Jade has a couple of close friends and some friends in school, but she won’t talk to them there. She likes school but is simply afraid to talk, explains Olivia.

“She is a very private person, likes her own space. She is not touchy or huggy. If you try to question her about things she just walks away.”

Jade always makes sure her hair and make-up are perfect before she leaves home in Lusk, Co Dublin. “It’s like a mask,” comments Olivia, who has to take her to and from school because she won’t go on a bus.

Not only is Jade silent at school but she also always keeps one hand on her chin, which can make practical subjects such as cooking difficult. “She has a dimple on her chin, holds her chin and won’t even let me see her chin,” says Olivia.

Although she has coped with school work and sat her Junior Cert last June, Olivia wonders how her daughter is going to manage the aural exams in Irish and French for the Leaving Cert.

Two months ago she started on medication, “our last resort”. Although it is early days, she seems more cheerful, says Olivia, who has just finished a course for parents of children with selective mutism, led by Dr Sharkey and Prof McNicholas, at the Lucena Clinic, a child and adolescent mental health service, in Rathgar. Another group of about 20 parents start next month.

Olivia found the 10 group sessions very helpful and wishes such practical information had been available to her years ago, as she feels she could have done more to help Jade if she had known more about her condition.