Published: 06:00, 19 August 2019
| Updated: 07:28, 19 August 2019
Ask one of Vivienne Ponsonby's ex-teachers what she was like at school and they would likely say she had an attitude.
A youngster who kept herself to herself and rarely spoke, she was seen as rebellious - someone who wouldn’t engage.
What they didn’t know was the Whitstable resident was in fact battling a crippling condition which left her unable to speak, gripped with such anxiety it rendered her vocal chords paralysed.
She had - and still suffers with - selective mutism (SM), a severe anxiety disorder which today affects about one in every 140 children.
But while the disorder is now recognised by health professionals in youngsters, there are many adults who missed out on crucial intervention in those early years, leaving them with a lifelong inability to communicate.
This heartbreaking situation led Mrs Ponsonby, from Whitstable, and fellow SM sufferer Jane Salazar, from Canterbury, to team up with speech and language therapist Maggie Johnson to launch the first peer support group of its kind in the UK, called SMTalkingCircles based in St Dunstan’s.
“We get asked how we run a group with people who can’t talk,” said Mrs Ponsonby.
“But we have developed ways to allow everyone to be heard.
“We have some who can’t talk at all, others can talk fluently at times, but there is no pressure to speak at all, although we want everyone to still have an influence in the group.”
Most of them have after all, she says, spent most of their lives without a voice - imprisoned by silence in public, misunderstood and unheard.
"We get asked how we run a group with people who can't talk... but we have developed ways to allow everyone to be heard" - Vivienne Ponsonby
And the 60-year-old knows only too well what this is like.
“I was never diagnosed,” she said.
“I had a lot of problems at school. I had a reading test when I was about six and I just completely dried up. Your throat freezes and you just can’t talk.
“I was put in remedial class and that was it. It really held me back, I don’t think anyone understood it back then.
“I was just seen as having an attitude and being rebellious. I became pretty isolated.”
She says while many youngsters with SM are loud and bubbly at home, only becoming mute in group situations, she struggled at home too after her mum remarried.
“With anybody I wasn’t used to or didn’t know, I just couldn’t talk,” she said.
“I ended up working in a paper mill factory on the production line.”
But against the odds - and with some relief in her condition during her 20s - she eventually went to university and had a career in pathology.
“It was hard getting a job, though - I would just freeze,” she said.
“I had about 50 job interviews before I got one.”
Mrs Ponsonby says when her youngest daughter started showing signs of SM she knew she had to get her the right support.
“It was pretty painful seeing her go through the same thing,” she said.
“It’s anxiety driven and that can pass down in families. I home educated her as I hoped this would help.”
She also managed to get support from the speech and language department at East Kent Hospitals NHS Trust and says she is now doing well.
But Mrs Ponsonby admits she herself still suffers with SM at times and believes this is the case with many other adults.
“Nowadays treatment and interventions are put in place in the early years to provide children with coping strategies,” she said.
“But many adults will not have received this support.
“In past years they are likely to have been perceived as extremely shy or even hostile and anti-social at school.
“Although SM may begin to subside as individuals reach maturity, many sufferers are left bereft of the ability to communicate freely in adult society.”