In the DSM-IV selective mutism is described as a rare psychological disorder in children. Children (and adults) with the disorder are fully capable of speech and understanding language, but fail to speak in certain social situations when it is expected of them. They function normally in other areas of behaviour and learning, though appear severely withdrawn and might be unwilling to participate in group activities. It is like an extreme form of shyness, but the intensity and duration distinguish it. As an example, a child may be completely silent at school, for years at a time, but speak quite freely or even excessively at home.

The disorder is not regarded as a communication disorder, in that most children communicate through facial expressions, gestures, etc. In some cases, selective mutism is a symptom of a pervasive developmental disorder or a psychotic disorder.

In diagnosis, it can be easily confused with autistic spectrum disorder, or Aspergers, especially if the child acts particularly withdrawn around his or her psychologist. Unfortunately, this can lead to incorrect treatment.

Selective mutism is usually characterised by the following:

The person does not speak in specific places such as school or other social events.
The person can speak normally in at least one environment. Normally this is in the home.
The person's inability to speak interferes with his or her ability to function in educational and/or social settings.
The mutism has persisted for at least a month and is not related to change in the environment.
The mutism is not caused by another communication disorder and does not occur as part of other mental disorders.

The former name elective mutism indicates a widespread misconception even among psychologists that selective mute people choose to be silent in certain situations, while the truth is that they are forced by their extreme anxiety to remain silent; despite their will to speak they just cannot make any voice. To reflect the involuntary nature of this disorder, its name has been changed to selective mutism in 1994. However, misconceptions still prevail; for instance, the ABC News erroneously attributed the cause of selective mutism to trauma and described it as willful in a report dated May 26, 2005.

The incidence of selective mutism is not certain. Owing to the poor understanding of the general public on this condition, many cases are undiagnosed. Based on the number of reported cases, the figure is commonly estimated to be 1 in 1000. However, in a 2002 study in The Journal of the American Academy of Child and Adolescent Psychiatry, the figure has increased to 7 in 1000.

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The internet and a "small miracle" - A Patient Who Changed My Practice
From British Medical Journal, 7/15/00 by Di Jelley

I have just returned from a mother's day concert at my 6 year old's primary school. The first "welcome" statement was made by a friend of hers, A, in a loud clear voice--a remarkable achievement for this particular child.

I have known A since she was a baby, watching her and two younger siblings pass through the baby clinic and reach normal development milestones. A was always a quiet child in company, but I was surprised to hear my daughter, in A's class at nursery, remark one day, "You know Mummy, A never speaks at school." There was no hint of developmental delay, and at home A interacted quite normally with her family. The transition to primary school saw a persistence of A's determined silence--no verbal interaction at all with her class mates or her teachers, although her basic literacy and numeracy skills developed in line with those of her peers.

A's parents were worried but remained patient and expectant--they at least knew her much more normal behaviour at home. By the beginning of her second year at school A had still not uttered a single word at school. She also refused to remove her shoes and socks for physical education in front of others and would eat nothing all day, neither school dinners nor a packed lunch. A's parents asked for a specialist review, wondering if any form of therapy would lead to more normal childhood interaction. No specific help resulted from this psychiatric assessment, but at least A now had a label "selective mutism," and in today's world a label by itself can begin to unlock doors.

I have to say my heart sank a little at the sight of sheets of internet printouts in A's mother's hand when she came in to see me a couple of weeks after the psychiatric clinic appointment. This was not because I resent patients accessing health information but because I don't know how to judge the quality or validity of this information--I don't know how to use it to make clinical decisions. But I was impressed. A series of case reports and parents' stories of children seemingly similar to A who had responded dramatically to short courses of fluoxetine.

This drug is not licensed for children in the United Kingdom, but our local drug information pharmacist was able to locate a small trial describing its use in children with selective mutism.[1] A's parents and I talked about the concerns relating to the use of unlicensed medication, and I thought that I had to share my reservations explicitly, drawing up a clear contract acknowledging our shared responsibility in using this drug on their child.

Within two weeks of starting the drug, A was recording taped messages for her teacher and beginning to participate in physical education. After six weeks she is chattering happily with her friends at school and has been to her first party alone. She has been transformed into a totally "normal" 6 year old, and her parents are slowly withdrawing the fluoxetine.

I am convinced that the use of fluoxetine has played a central part in this huge change in A's behaviour, and I am equally sure that without the internet her parents could not have accessed this information. So if my heart sinks again at the sight of a patient's internet printout, I will simply remind myself of the small miracle of A and suspend my prejudgment.

Di Jelley general practitioner, North Shields

[1] Dummit RS, Klein RG, Tancer NK, Asche B, Martin J. Fluoxetine treatment of children with selective mutism: an open trial. J Am Acad Child Adolesc Psychiatry 1966;35:615-21.

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