Selective mutism: Breaking the silence
A new website set up by parents provides information to help children with a little-known anxiety disorder
Beyond shyness
Parents of children with selective mutism established Selective Mutism Flanders about two years ago. Their first initiative was to set up a Facebook page and group for parents to exchange experiences and talk about their concerns. About two weeks ago, they also launched the website, with tips and scientific information for teachers, parents and professionals such as speech therapists and psychologists.
One of the driving forces of the organisation is Sam Biesemans from the Brussels district of Watermaal-Bosvoorde. His 18-year old son, Matteo, suffered from selective mutism for almost 12 years. “From the start of nursery school, he was unable to speak in class or even interact through nodding or shaking his head,” says Biesemans (pictured above with Matteo). “At home, he could speak to us without any problem.”
Although the disorder has been known to scientists for decades, selective mutism has only recently been defined as an anxiety disorder. Typically, children with selective mutism have normal speech development but completely shut down in an environment where they are uncomfortable because of certain social expectations from others – mostly adults with a certain authority.
Children can’t, for instance, speak in class, answer simple questions at a shop or even interact with visitors at home. Many have relatives with anxiety disorders, speak different languages at home, are perfectionists or have certain symptoms of autism.
According to estimates by the World Health Organisation, seven children out of 1,000 suffer from selective mutism, which means there should be one child with the disorder in every average-sized school. However, research into selective mutism is still at an early stage, and there are not yet specific figures available for Flanders.
Selective Mutism Flanders hopes to encourage research by forging links with similar organisations abroad and setting up an international colloquium.
Suffering in silence
Joulia, the 10-year old daughter of Julie De Munck from Lokeren in East Flanders, was first diagnosed with autism and is also highly gifted. Just like Matteo, Joulia didn’t speak from her first day at nursery school, and suffered from the disorder for about seven years.
When he was 10, Matteo broke his thigh, but he couldn’t tell his teachers what had happened
Matteo grew up in a family where three languages were spoken: Dutch, French and Italian. “One time, when he was about 10, Matteo slipped on the floor during a swimming lesson and broke his thighbone,” Biesemans recalls. “But he couldn’t tell his teachers or classmates what had happened. When I arrived to get him, he broke down in tears and told me how much pain he was in.”
De Munck remembers a similar incident, when Joulia fell in the playground. “But she would almost always come home from school frustrated about something, like because she couldn’t tell a teacher she hadn’t been given the right lesson material in class. She then worked out this stress on us at home, often shouting in anger.”
“Children with selective mutism have extreme, irrational fears of negative reactions if they were to say something,” explains Goedele Vandewalle, a retired psychologist with long-term experience in dealing with the disorder at the Centre for Mental Healthcare in Antwerp. “Although they want to speak, the children are physically blocked from interacting and experience extreme stress, which sometimes even causes them to hyperventilate.”
De Munck explains that her daughter would shut down if, for example, an unknown person asked her to just say “thank you”. “Her face would turn into a kind of mask, with a cramped expression,” she explains. “It almost seemed like she was smiling, but in fact she was terrified.”
Stress and tension
As the children are completely unable to explain their feelings to teachers, many think they are being stubborn or even playing some kind of game. “Teachers often try to force them to answer or promise a reward when they do,” says Vandewalle, “but such tactics are counterproductive because they only raise the pressure and tension for children.”
Because some teachers and directors didn’t understand the disorder, they thought Matteo and Joulia wouldn’t reach the Flemish eindtermen, the final requirements to graduate from secondary education. Because of her increasing stress, Joulia spent a few years in the special education system, but Matteo stayed in the regular education system for his entire school years. “We often had to battle against ignorance about the disorder and explain that selective mutism has nothing to do with intellectual deficits,” says Biesemans.
Over the years, with help from speech therapists and psychologists, Matteo and Joulia’s situations improved. “The best method is cognitive behavioural therapy,” explains Vandewalle. “Gradually, we improve children’s self-confidence with exercises in so-called dapper denken en dapper doen (brave thinking and brave doing).”
Therapists also help parents deal with their own fears and help their children in the best possible way. For example, a therapist might ask children first to blow out a candle or to make an animal noise, before starting with counting games, speaking actual words and forming sentences. Over the years, both Matteo and Joulia also made close friends who functioned as their spokespeople in class. They would whisper their question or answer in the ear of this friend they trusted and he or she would speak for them. More elaborate speaking assignments could be taped on a recorder and played in class.
Making progress
In the Netherlands, specialists have developed the pioneering treatment programme Spreekt voor zich (Speaks For Itself), which includes an educational computer game. In the game, children can open gates in a castle only by making sounds, from hissing like a snake to forming actual sentences.
Children with selective mutism have extreme fears of negative reactions if they say something
A difficult step in the therapy process is when the therapists have to come to the school every week to assist the youngsters. “This is essential because children gradually have to adapt to the actual environment where they experience their fears; simulating the situations in a therapist’s office is not sufficient,” explains Vandewalle.
But the therapy is expensive, since it typically takes about two years to conquer the anxiety, and the social security system only refunds a small amount of the cost. The distance between the therapist’s office and the school can also pose practical problems.
De Munck contacted her niece, Lynn Lammens, who is a speech therapist. But as it was her first selective mutism patient, she had to look up a lot of specific information before the therapy could start. Lammens, a lecturer at the University College Ghent (HoGent), now strives to educate future therapists and teachers about the disorder.
HoGent has already organised a study session for teachers and therapists, and Lammens has given a lecture to school directors and staff from the pupil support agency CLB.
Although therapy helped Matteo and Joulia make progress, they both only started to function normally after they changed schools. “In his old school, Matteo was scared about how his fellow students and teachers would react if he suddenly started speaking,” says Biesemans. “But at the new school, he no longer had that reputation of ‘the boy who doesn’t speak’.”
Looking to the future
In the meantime, Matteo has mastered four languages and doesn’t have any problems speaking in public anymore. He is even considering a career in the communication or media sector, perhaps, he says, as a sports journalist.
For Joulia, the step to a new school was bigger because she also went back to regular education. “As a highly gifted child, she didn’t get the proper stimulation at special education and got bored,” explains her mother. “At that time, she had started speaking to one teacher in particular, who she trusted a lot. But when her brothers started going to another school, Joulia decided that she would join them and start speaking normally to everyone from the first day. To our relief.” Joulia now has taken up several hobbies, like music and plans to start creative studies later.
To avoid children with, for example, mild forms of autism or selective mutism being transferred to special education too soon, Flemish education minister Pascal Smet has proposed a decree for more inclusive education. It states that children with special needs should get more support in regular education, to keep up with the rest of the class.
Photos by Dieter Telemans
