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Stories of Children and Youth

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The children suffering in silence of selective mutism

Clare Killam is a typical Grade 3 student. She competes in gymnastics, trades Shopkins toys with her friends on the playground and plays with her older brother and their pets. There is no evidence the little girl struggled for several years with an anxiety disorder.

Clare was about three when her parents noticed she wouldn’t talk outside of the home or when they had visitors. At preschool, she was a bright student but didn’t speak. By the time Clare was five, her mother began doing research to try to learn what could be causing her daughter’s silence. “This kid who we saw in our house was not the kid that the rest of the world saw, and it was so heartbreaking,” said Lindsay Killam.

Specialists at B.C. Children’s Hospital diagnosed Clare with selective mutism. According to the non-profit Anxiety B.C., children with selective mutism suffer from an anxiety disorder that prevents them from speaking in certain social situations, often at school. It affects about one per cent of the population and girls are twice as likely as boys to develop the disorder.

Despite attempts at behavioural treatment after her diagnosis, Clare did not speak throughout kindergarten. Before Clare began Grade 1, Killam found an intensive treatment program in New York and invested in a two-week camp that focused on exposure therapy. It worked. “It opened her world,” Killam said.

Back home, Clare’s parents worked with her to “fade in” new people, including her grandmother, to whom she had never spoken.

The cause of selective mutism is likely a combination of nature and nurture, said Annie Simpson, a Vancouver-based psychologist who specializes in treating the disorder. “(Some) kids come into the world with certain genes and temperamental traits. They tend to be more behaviourally inhibited,” Simpson said.

Selective mutism is best treated through cognitive-behavioural therapy, which is counselling aimed at changing behaviours – for example, replacing the thought “I’m scared” with “I’m brave” – and graduated exposure to what the child fears, such as through talking games. Medication may also be prescribed.

Simpson ran a week-long intensive therapy camp in Vancouver last summer. As far as she knows, it’s the first of its kind in Canada, attended by children from all over the country. “It’s really about making things into games and fun and how do we get kids engaged but confront their fears,” she said.

The first signs of selective mutism usually show at around age three or four, when a child enters preschool. It may be dismissed as shy behaviour at first. “The age of intervention is not until six to eight years of age, and so kids are going a long time without treatment so it’s becoming more and more entrenched and harder to treat the longer you go,” Simpson said.

The mood and anxiety clinic at B.C. Children’s Hospital has a selective mutism component, and acts as a resource for child and youth mental health teams. Treatment is also available at private practices. A two-year study on behavioural treatment for selective mutism in kids between the ages of four and 10 is underway at B.C. Children’s and will be completed next summer.

Dr. Rosalind Catchpole, the study lead, said the disorder is studied much less than other anxiety disorders. “At the time we decided to do this study there were only two published studies in the literature looking at efficacy of behavioural techniques,” she said. “Collectively, I think there was a recognition, certainly within our clinic that really we can do a better job with selective mutism.”

Surrey teen Lily Alexander didn’t speak a word at school until Grade 4.

In preschool, Lily’s parents assumed she was shy until a teacher told them she wasn’t speaking at all. Daralyn Alexander recalls her daughter freezing at the doorway of her classroom. She couldn’t eat in front of other kids or ask to use the bathroom. If she got hurt on the playground, she couldn’t ask for help.

Lily was diagnosed with selective mutism at B.C. Children’s after a speech-language pathologist brought the disorder to her parents’ attention. In Grade 4, Lily began weekly one-on-one therapy. “It’s not like I didn’t want to speak – every time I tried to talk I would shut down,” said Lily, now 15. “I felt anxious and alone.”

Today, the Grade 10 student is articulate and outgoing, and received an A in drama last year. She smiles when asked what it felt like when she finally began to speak. “It was very liberating,” she said.

By Rosemary Newton

18 April 2017 


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