My child suffers from Selective MutismAlamy

Maya Larholm is a lively, talkative four-year-old with what her mother Alyson describes as a 'cheeky sense of humour' and 'a very stubborn streak'.

Yet to Maya's classmates, teachers and indeed many members of her wider family, this description would prove something of a surprise. Most of them have never heard her speak.
Maya suffers from Selective Mutism (SM), an anxiety condition in which children (and adults) are totally unable to speak in certain situations. `

So while Maya chats freely at her Hertfordshire home with Alyson, 39, her father Brian and her 13-year-old twin brother and sister, Ryan and Taryn, she is almost totally mute outside her home or in earshot of others.

Maya started in the nursery class at school last September. It was April before anyone heard her utter a single word – and then it was only to one teacher and three children after a painstaking process of familiarisation.

Selective Mutism is thought to affect around 6 in 1000 children – around the same number as are diagnosed with classic autism – yet, while awareness is steadily growing, many education and health professionals, as well as parents lack knowledge about the condition.

Until last year Alyson was among those who had never heard of SM.

"Looking back I can see that Maya started to withdraw a little last year," says Alyson. "One day I dropped her at the childminder's and she pretended to hand me her voice, but she had always been so chatty, both in English and her father's native Danish, that I had no concerns and thought nothing of it."

Between April and October last year though Alyson did begin to worry as her daughter 'slowly completely shut down'. By the autumn, despite chatting normally at home, she was unable to speak even to her grandparents.

Alyson and Brian assumed the silence was a phase. It was when they attended a big family dinner with a totally silent Maya, that the possibility of SM was first raised. One of Alyson's aunts worked in a school and had first-hand experience of a child with the condition. She gently suggested Alyson look into it.

"When I googled it I immediately realised I was reading about Maya," says Alyson. "I knew then it was a problem and we had to deal with it.

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I saw that it was about anxiety rather than being stubborn.

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The condition can be transitory at time of high stress – such as starting school or being admitted to hospital – but it can also persist if left untreated.

"Reading about the links between untreated SM and later mental health problems was very frightening," says Alyson.

She immediately consulted Maya's GP who was initially sceptical about Alyson's concerns. He asked to see Maya, whereupon he observed her chatting freely with her mother and then becoming totally silent when he addressed her.

"It was as if her throat locked," recalls Alyson. "She did all the things he asked her to do – jump and so on – but she didn't make a sound. He was very surprised, totally agreed with my suspicions and said he would arrange whatever we needed."

Maya was referred for speech and language therapy but Alyson soon discovered that many speech professionals lack training about SM. It was when she made contact with more experienced and specialist therapists, through the SM charity SMIRA, that the family began to make real progress.

Alyson learnt about the very gradual process called 'sliding in', through which children with SM become relaxed enough with a particular person to be able to speak to them. She learnt that the condition is effectively a phobia – which explained why Maya seemed so much her usual self when there was no expectation for her to speak.

Over several months Alyson worked with Maya to 'slide in' her own parents, her sister, three of Maya's school friends and her teacher - who gave up some of her Easter holiday to spend time with Maya at home.

The process involved playing games together, before eventually progressing to talking behind a hand or blanket and then finally talking freely.

"The change was amazing. She went back to school a different child," says Alyson.

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It is so hard as a parent to see your child so anxious they literally cannot speak. We would try to get her to school and she would be 15 minutes shaking on the doorstep. She knew that there was an expectation for her to talk and she was just totally unable to do so.

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While Maya is now able to talk to these few individuals at school she is still very far from being able to enjoy herself normally or give any real sense of her personality – a situation her parents find 'heart-breaking'.

"It upsets me that people don't get to see what a sweet, kind, gentle person she is," says Alyson. "They don't get to see the sense of humour. They just see her withdrawn and compliant.

"Luckily she is popular in class at the moment but I do fear that will change as the others realise she is more different and they stop talking to her."

Loved ones too are affected by Maya's inability to speak to them. The family recently visited Maya's paternal grandparents, to whom she is very close, in Denmark. Maya did not speak a word to them and was only able to speak to her parents in the car. It was, says Alyson, a 'terrible trip'.

"Being in that different environment was just too stressful for her. Obviously that is very upsetting for us all. There are important people in her life who want a relationship with her but they can't. She has never spoken to my brother. People often end up in tears if she talks to them."

For now all Alyson and Brian can do is to continue to try and gently increase the circle of people Maya is able to talk to and limit her anxiety. They hope that in the meantime increased awareness of SM will help Maya and other children like her.

They hope that if people realise that Maya is not simply choosing not to talk they might better understand her condition.

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Maya has the words. She desperately wants to talk, she just cannot get those words out.

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For more information on Selective Mutism visit www.smira.org.uk or read Can I Tell you about Selective Mutism by Maggie Johnson and Alison Wintgens (Jessica Kingsley Publishers, £7.99)