Locked in a world of silence
Fay Martyn's speech seemed to develop like any other toddler's.But when she started school, she stopped speaking. The youngster continued to communicate with her parents, older brother and sister and some relatives.
But teachers and pupils drew a blank. At the age of five, Fay was diagnosed by an educational psychologist as having selective mutism - a willingness to speak freely in some settings and not at all in others. The condition affects about one in 500 children. Girls are more prone to this than boys.
In the course of their working life, teachers can expect to come across a child with selective mutism once every five years.
In most cases, children will start to talk by the end of their first month at school. But for some, the silence continues. When Fay started school, she was often removed from normal lessons and given individual teaching so she would not feel forced into joining activities with other children.
"Fay never wanted to be left alone at school, from the very start. She was very clingy and always wanted me to be there," says her mother Anne, 45.
"It became very difficult and stressful for everyone concerned. What child of that age never speaks? As a result Fay has found it hard to make friends and has been bullied throughout her school life.
"Now, at 13, Fay doesn't have any friends. We have bought her a computer so she could talk to other children, using chatrooms and forums. But at school other pupils could be very nasty."
Bullying would normally take the form of provocation with the sole aim of forcing Fay to speak. While it failed to elicit that response, it made her even more withdrawn and fearful.
Fay, who lives in Beccles, Suffolk, occasionally received help from a classroom assistant. Her mother says that many of her teachers did what they could to help. What they lacked in formal training, they tried to make up with gleaning information from the internet.
"We've had teachers who would give us a daily progress report on how she was getting on," says Mrs Martyn. "But mostly they don't have the time to concentrate on one child, and anyway they don't know much about selective mutism. Sometimes they would tell her that unless she talked she wouldn't get any help in the classroom, which isn't the way to go about it."
Two years ago, Mrs Martyn removed Fay from school. The family has tried, with little success, to get her home tuition. They hope she will return to some type of formal education in the future.
"We don't know what has caused her to be like this," says Mrs Martyn. "They say that in some children it can be triggered by a trauma, but we don't know of Fay experiencing anything like that. She is an extremely clever girl, very bright and has always done well at school, probably because she didn't talk and just got on with her work."
The Martyns are concerned that their daughter's mutism may continue into adulthood. Most young people eventually grow out of the condition, but some continue not to speak.
"We just want her to grow up to have the same opportunities as any other child," says her mother. "It is very worrying as it does not seem to be getting any better the older Fay gets. Many people still don't take this seriously and think the child is just being rude when they don't respond."
Alice Sluckin, a retired psychiatric social worker who has worked with children with mutism for more than 30 years, says the condition could be puzzling for teachers. "Schools now tend to be very pressurised places and these children are no trouble because they are not disruptive. Often the best way to deal with it is to have one-to-one support until the child feels comfortable in the school setting and has built up trust," she says.
"It should be treated as a phobia. Thirty years ago, these children were labelled as stubborn and aggressive but, in fact, this is an anxiety condition.
"It needs to be dealt with quickly. The older a child gets the more entrenched it becomes, and a part of their self-image. Some children may need to change schools and have a fresh start where other pupils do not know they have this and cannot draw attention to it."
Maggie Johnson, who runs courses for teachers on selective mutism, advised not to treat the child as being stubborn or difficult. "Teachers should be understanding. Never ask 'Why won't you talk?' because it sounds challenging. The child doesn't know why. The way to approach it is to find other ways of communicating such as nodding, pointing or writing messages,"
"It is important to develop trust so the child doesn't feel threatened.
When they feel happier and more relaxed there will be more chance of verbal communication.
"In one school, a teacher and student communicated by text message which proved an effective way of breaking down those barriers.
"Sadly, provision for children with selective mutism remains patchy. It is not recognised in every authority and it needs to be."
WEBSITES, BOOKS, HELPLINES
* Selective Mutism Information and Research Association Helpline: 0116-212-7411
* The Selective Mutism Resource Manual Maggie Johnson and Alison Wintgens Speechmark Publishing pound;37.50
* For training courses, contact Maggie Johnson Email:
* The American website www.selectivemutism.org carries resources and information for teachers.
WHAT IS SELECTIVE MUTISM?
* The causes have not been established, however, some studies point to a genetic influence or vulnerability. Previous links to abuse have been largely rejected.
* First symptoms are usually noticeable between the ages of one and three.
They may include shyness, a reluctance to speak in some settings and a fear of people.
* Associated behaviour can include no eye contact, few facial expressions, immobility and nervous fidgeting. These indicate an attempt to control rising anxiety rather than wilfulness.
* Older children may also have obsessive-compulsive disorder or symptoms similar to Tourette's syndrome, as well as other phobias.
* Successful treatments have included behaviour management programmes that are motivating and provide positive reinforcement. Pressure, including punishment or bribery, is harmful.
* Selective mutism should not be confused with autism. Autistic children have limited language ability, while those with selective mutism are capable of speaking, and normally do in comfortable circumstances.