The children choose who to stay SILENT
They’re chatterboxes at home but can’t say a word outside. The sad – and surprisingly common – plight of youngsters with selective mutism
AT HOME Lucy Parker is a typical five-year-old, chatting away non-stop as she plays pretend princesses with her dolls and teddies.
But every morning, when she walks to school with her twin brother Archie and mother Zoie, she undergoes a striking transformation. As soon as her school comes into view she gets quieter and quieter, and by the time she reaches the playground she’s stopped talking completely.
And silent is how Lucy remains for the rest of the day. Until she spies her house again in the afternoon, she won’t utter a word to teachers or her classmates.
She won’t talk to her twin, laugh — or even open her mouth to cough. If she needs to use the toilet or feels ill she has to hold up flashcards. Even if she falls over in the playground and hurts herself she won’t make a sound,’ says Zoie, 30, a fulltime mum from Chelmsford, Essex. ‘Tears roll down her cheeks but she won’t cry.’
Lucy is one of an increasing number of children being diagnosed with ‘ selective mutism’ — a phobia of speaking outside the home. It’s a complex condition that usually strikes between the ages of three and six, and while nobody knows the exact cause, it is associated with severe anxiety.
With an estimated one in 150 children suffering from selective mutism in Britain, it is thought to be almost as common as autism, despite its much lower profile.
And Lucy’s mother says the impact on the child and their family can be devastating: ‘I find it incredibly sad to think my little girl must be so anxious she can’t speak.
‘How can anyone so young feel that much fear? I’ve been told she will talk in her own time and I have to be patient, but it’s so hard to watch, especially when you know how different your child can be.’
Zoie, who is separated from the twins’ father, says before Lucy started school she was an outgoing child. ‘ She was the dominant twin while Archie was more reticent. Now it’s completely reversed.
‘When they entered reception they were split up and put in different classes, and Lucy’s teacher started telling me she wasn’t saying a word. We thought it must be shyness but she’s never improved and was diagnosed with selective mutism a few months ago. I always wonder if separating them was the trigger — it’s something I deeply regret.
‘The only thing Lucy’s said to me about it is she feels her voice is stupid. She has a lisp, so I also wonder if someone’s made a comment about that. But she’s got a beautiful little voice and I would love for others to hear it.’
It is, says Zoie, as if there are two Lucys. ‘The minute we get home from school, all the words flood out like she’s been bottling them up all day.
‘She will stay awake until 10pm because she can’t stop singing and chatting.’ Simon and Diane Wainwright also know how difficult it is having a child with selective mutism. Their daughter Catherine, 15, a talented musician, can perform a piano solo in front of hundreds of people, but for the past 12 years has barely spoken a word to anyone other than immediate family and one or two close friends. ‘At home or in the car with us, she’s very chatty and will tease us and make jokes — all the normal things teenagers do,’ says Simon, 57, an electrician from Birmingham.
‘But outside the home she doesn’t talk, and if someone comes to the house, they’ll maybe get a “hello” before she rushes upstairs to hide.
WHILE Catherine’s private secondary school is very supportive, inevitably she misses out on social things — she’s always outside the group.
‘I worry about the future. She wants to go to university but how will she cope with interviews or living away from home if she finds it impossible to communicate?’
Simon and Diane, 50, a business studies teacher, have fought a long battle for their only child’s condition to be recognised and treated after a psychologist failed to diagnose her a decade ago.
‘We think it started when Catherine was three,’ says Simon. ‘Teachers at her nursery told us she didn’t talk at all, which was odd considering how chatty she was at home. The following year we had her assessed by a psychologist who said there was nothing wrong and she would grow out of her “shyness”.
‘But the problem persisted and we were passed from agency to agency. At one point we were told by the local speech and language therapy service that they didn’t “do” selective mutism.’
It is only in the last couple of years, with the help of Catherine’s school, that the Wainwrights have managed to get a teaching assistant to help her speak in public. The technique, known as ‘sliding in’, involves getting her to relax — by playing cards for example — so she almost forgets about not speaking. Gradually other members of staff are encouraged to join in, and slowly Catherine builds up the confidence to talk to them.
Simon says: ‘The other day she answered the phone at home — a massive step forward. Her mutism is very entrenched now, and it’s one of my biggest regrets that the chance to treat her earlier was missed.’
Not wanting to put their daughter under pressure, the couple have held back from speaking to her about why she finds it hard to speak.
Consultant speech and language therapist Alison Wintgens, who is based at St George’s Hospital in London, is one of Britain’s few experts on selective mutism.
She says it is often poorly understood. ‘It used to be thought that children like this were “refusing” to talk — but it’s not a wilful thing and nor is it shyness,’ she explains. ‘More it’s an inability to speak caused by anxiety. The vocal chords freeze up and no words can come out.’ While the trigger that suddenly robs a child of speech is often never identified, the problem can begin with a mild childhood trauma — perhaps calling out in the night to find it’s a babysitter who comes instead of a parent.
The child associates speaking to strangers with a feeling of panic so begins to avoid those situations. Not speaking becomes a way to control the anxiety.
In the U.S. children with selective mutism are routinely prescribed Prozac, as the anti-depressant can reduce the anxiety levels that cause children to clam up. But this is a controversial route in Britain.
Speech and language therapist, and selective mutism expert, Maggie Johnson, says far fewer children are medicated in this way here.
‘ Prozac can be prescribed to secondary school-age children where the mutism is entrenched and who have become depressed with their situation,’ she says — adding that success rates are not high. ‘It is only successful in conjunction with cognitive therapies.’
Catherine was once prescribed a mild dose, though her father said they saw no improvement and she no longer takes it.
But Maggie Johnson says anecdotally Prozac has great success in low doses for preschool children. ‘ It works because with them the issue is pure physiological anxiety, they have not begun to worry about why they are not speaking,’ she says. ‘ While most GPS will still be reluctant to prescribe, there are well-informed parents who have carried out research and seen the good results from the States and want it for their own child.
‘ Yes, there is success but we believe that with this age group, if parents don’t pressurise their children to speak they will get better without medication.’
For those whose condition is identified early, selective mutism can be simply a childhood phase. Since Lucy’s diagnosis she has been receiving help at school like Catherine.
ZOIE says there has been a slight improvement — Lucy will now open her mouth to cough, and rushes to play with friends every morning even though she remains largely silent.
For 11-year-old Red Jolley’s parents, Carrie and David from Northamptonshire, there is hope, too.
Supply teacher Carrie, 37, admits it was not Red’s first word as a toddler that brought tears to her eyes but a very ordinary question she asked a teacher on a visit to a prospective secondary school 18 months ago — the first words she’d spoken aloud to anyone other than eight close family members. ‘I could see her struggling to get the words out then she managed it,’ says Carrie. ‘I was overwhelmed with pride but I couldn’t show it: making a fuss would draw attention and run the risk of her clamming up.’
Carrie says there are many aspects to selective mutism that are hard to comprehend. For example, she credits Red’s participation in a TV documentary about the condition two years ago with her improvement.
‘After it was aired she felt everyone now knew who she was so they wouldn’t pressure her to talk,’ Carrie explains. ‘A month after that she started talking to a couple of girls at school. Then in September she started at a new school further from home. Because nobody knew her and had preconceptions about her, she’s found it easier to talk.’
For all Red’s leaps and bounds, Carrie poignantly reveals she has still never spoken directly to her maternal grandfather, who doesn’t live locally.
‘They leave voice messages for each other — but for her to speak to my father would be the real breakthrough,’ Carrie says.
For Red’s parents — and those of Lucy, Catherine and thousands of other children trapped in a world of silence — the day those words finally come will be a day to celebrate.