The boy without a voice - who's helping others find theirs

Five-year-old Sohail Ahmed could see people waiting for him to speak. He could hear the instructions inside his own head. But no words would come.

"Looking back, it's as though you're paralysed in some ways," he says.

"You're there, but you're not there. You're in the room, but you're not in the room.

"Everybody's waiting for you to say something. You look at yourself from that out-of-body experience and say 'go on, say something', but you don't, and you can't."

Now, more than four decades later, it has been quite the journey for the Bradford GP and community activist, who will be among the keynote speakers at a TEDx event at Bradford Arts Centre later.

And presenting his talk, The Boy Without a Voice, will bring him face to face, for the first time in public, with the frightened five-year-old he was.

Looking back on his childhood, Ahmed says adults called him shy, awkward or stubborn.

Sometimes he was even labelled arrogant or rude. As he grew older, there was bullying, laughter and ridicule.

The possibility that he was not choosing his silence, and that he was genuinely unable to speak, was not considered by anyone.

It took more than 20 years for Ahmed to find an explanation.

While studying child psychology during his medical training at Hull York Medical School, he came across a passage in a textbook.

"It perfectly described me as a child," he says.

"It was a very small paragraph, maybe six or seven lines. But when I read it, I knew that was me."

The condition was selective mutism, an anxiety-related disorder in which somebody who can speak in some situations finds it impossible to do so in others, often inducing a freeze response, anxiety and panic.

The discovery brought relief, but also painful questions. There had been no support during his childhood and he was not aware of anything available to him as an adult.

He pushed it, as he puts it, "under the carpet".

But it never really left him, despite academic and professional success.

Working in medicine gave him little choice but to use his voice.

"I see nearly 20 patients a day, so you can imagine if I decided not to speak, it would be quite difficult."

Yet he still avoided situations where he may have to address strangers and was content to "just get on" with his job.

Then two things happened which changed his relationship with his voice entirely.

Firstly, his own five-year-old daughter began showing signs that she may have the same condition.

Ahmed remembers a teacher questioning why she did not speak, saying there must be something wrong with her.

"I had no words," he says.

"It kind of triggered me and for that brief moment, I became a five-year-old again, standing next to my daughter and holding her hand."

Ahmed secured speech and language therapy for his daughter Aminah and she is now flourishing without the challenges he faced, he says.

The second thing that happened was the Covid pandemic.

Bradford's minority ethnic communities were hit particularly hard - misinformation was spreading and people were looking for trusted medical voices.

Public attention made him deeply uncomfortable, he admits, but the crisis felt bigger than his own anxiety.

"There needed to be somebody to say something," he says.

"If that had to be me, for the sake of my community and the wider community, then I had to do it and overcome whatever issues I had."

It was speaking publicly in this way that led him to notice other people who had something valuable to contribute, but lacked the confidence or perhaps suffered similar anxieties.

Through his work with campaign group Bradford for Better, Ahmed established a public speaking course.

He also founded a Bradford branch of public speaking organisation Toastmasters International.

His mentees now regularly stand on a stage or address an international online audience.

"It became addictive for me to see people shine. It's like a caterpillar stuck in a cocoon, struggling to get out. But the moment it comes out, you see the wings, the colours, and off it flies. It's beautiful."

The NHS estimates that selective mutism affects about one in every 140 young children, although Anita McKiernan, a specialist speech and language therapist and adviser to the Royal College of Speech and Language Therapists, believes the true picture may be more complicated.

Research involving preschool children has reported higher rates, with some studies suggesting the condition may be more common in multilingual and immigrant communities - perhaps even four times higher than the average.

McKiernan describes selective mutism as "a consistent fear of the expectation to speak" in particular situations, despite the person being able to talk comfortably elsewhere.

"It's not a choice; it's not a decision," she says.

"When that fear response kicks in, there's that whole sequence of physical and psychological impacts that mean speaking is off the table at that point."

Although professional understanding has improved markedly since Ahmed was a child, McKiernan says selective mutism remains "one of the most misunderstood conditions of childhood".

She says it can overlap with social anxiety, speech and language difficulties and autism, making careful assessment essential.

What is still largely unknown, she stresses, is how many adults experienced it historically without ever reaching clinical services, and the long-term impact of that.

"We only have clinical data, which means we only get to look at clinical cases," McKiernan says.

"Nobody knows how many people are out there who feel this could have been what was happening [to them]. There are a lot of gaps in the literature."

Meanwhile, Ahmed now regards the condition that once restricted him as somewhat of a blessing.

"Had it not been for this experience, I wouldn't have the empathy and maybe the ability to see what I see in other people," he says.

"Your voice is much more than just the noise and the sound that you make. It's the purpose that you are living with and for."