She stutters, but hardly anyone knows it

If no one says there is something different about you, you might not be aware of it yourself.

Berit started to stutter at the age of four but no one around her reacted to it. So she didn’t realise she stuttered.

“In our family it was almost the norm. My father, older brother and two of my cousins all stuttered,” she explains.

But there was a rude awakening when she began primary school. That’s when “BBBBBerit” was taunted with questions like “What Indian tribe do you belong to?”

“It hurt,” she says. Her eyes tear up when she recalls those days. But she adds that she never experienced what she would define as bullying.

This Saturday she is taking part at Oslo’s Elderado Book Store in the launch of a book “Ord til besvær – Livet med stamming” [The woe of words – Life with stuttering (our translation)]. The book results from a project that charted how stuttering impacts the quality of life.

A well-kept secret

Berit Løkken belongs to a category of stutterers that many have never heard of, so-called covert stutterers. They are also a rather ignored factor in medical and psycho-social science.

She learned at early age to instantly come up with alternative words as she was formulating her sentences, realising that an intended word would likely be stuttered.

So her stuttering problem is hidden from those who don’t know her well.

This tactic generally works pretty well. But it requires a lot of energy. At times she gets really tired of all the premonitions that come and the constant need to omit a word and substitute it with another.

Sometimes no synonym or way of circumlocution comes readily to mind.

“The other day my son and I drove into a McDonalds Drive-Through. I was the driver and was the one who had to order a cheeseburger ‘without dressing’ to a man I couldn’t see.”

But just as she was about to place her order through the intercom she was alerted to the word “dressing”. She felt the usual knotting of her stomach and tightening in her chest. She knew she couldn’t say the word “dressing”, so she told the man to hold the “salsa” on the cheeseburger. That was the closest synonym that cropped up.

The McDonalds clerk didn’t know what on earth she meant so after three attempts at an explanation her son leaned across from the passenger seat and cleared things up with the unseen fast-food clerk.

Covert but stutter just as much

Hilda Sønsterud is doing her doctoral thesis on the subject of stuttering. She has worked with 18 persons who have the affliction, including several who conceal it. One of them is Berit Løkken.

Sønsterud says that nobody knows what percentage of stutterers are of the covert variety. There is nearly no research on the subject. There isn’t overly much research on stuttering of any sort, for that matter. But it has been estimated that just shy of one percent of the population stutters.

“But when I was recruiting for the doctoral thesis I became aware that covert stuttering is an affliction that encompasses more people than I expected.”

Berit Løkken has never spoken with anyone who has the same problem as she does. So she has often heard that she cannot be categorised as a stutterer because her challenge is so unnoticeable.

“Sometimes I have felt kind of rejected. But I have now ascertained that I have something within the realm of speech therapy. I only wish it hadn’t taken so long to find out.”

How do they do it?

New research is indicating neurological differences between persons who stutter and ones who do not. These involve the activation of the brain and brain structures and can be seen in advanced x-ray technology.

There are also strong indications that stuttering has a genetic origin.

Sønsterud finds that most stutterers, including those whose affliction is very audible, try to circumvent certain words and situations as ploy to conceal their problem. This makes clear definitions for open and covert stuttering rather hard to make.

“Speech therapists have several tools for diagnosing stuttering. They find that covert stutterers experience just as much stuttering problems as those who stutter outright. But they make instantaneous analyses of risks on whether they will be able to utter a word. If it looks to pose a problem they exchange it for another,” she explains.

Sønsterud says it is difficult to understand how anyone can conceal their stuttering so well that hardly anyone notices it. They presumably have vocabularies and a gift for speaking well beyond those of the average person.

Demands energy

“I get pretty fatigued if I encounter many situations like that at McDonalds in the course of a day,” says Løkken.

Sometimes when she is focused on averting a stutter she forgets to breathe. Her body gets very tense and her brain goes into overdrive.

It takes enormous energy to be a covert stutterer.

“For many it is just a matter of time before they realise the costs of concealing their stuttering is too high,” says Sønsterud, who works as a speech therapist at Statped, Norway’s national service for special needs education.

The psychological burden is at least as large for covert stutterers, she explains. The fear and embarrassment of stuttering outweighs the stuttering problem itself.

“Stutterers are not actually more sensitive or anxious than other people. But their challenging affliction with speech can trigger anxiety and saddle them with a larger psychological burden,” says Sønsterud.

She likens stuttering in one sense to an onion.

“The harder one struggles, the deeper the layers of negative thoughts, emotions and avoidance behaviour.” It is easier to work with stuttering once you peel away all these layers and get to the core.”

Stood on a crate in Oslo

There are now several ways to treat stuttering. Speech therapy combined with exposure therapy has the best documented effect, according to Sønsterud.

Løkken has given this approach a go. At the age of around 40 she enrolled in the stammering treatment plan known as the McGuire Programme. One thing it had participants do was start up a conversation with complete strangers on the street. As a lesson in non-avoidance they were supposed to intentionally stutter, using “non-problematic” words – but the experience would be uncomfortable in any case.

“We went out together in couples, side by side. It was really fascinating. When the one of us who approached the stranger stuttered we saw that this stranger responded by answering to the other one of us instead. It seemed like the stutterer had been demoted.”

The course culminated with Løkken and other participants taking turns standing on a proverbial soapbox at a busy square in the heart of Oslo, Egertorget, and holding speeches which were intentionally rife with the stuttering of “non-problematic” words.

“This was hugely empowering,” she recalls.

But new, uncustomary techniques require constant vigilance and maintenance. This was very demanding and a year after the McGuire Programme, Løkken fell back into using her old avoidance techniques. Years later she returned to speech therapy at Statped in connection with Sønsterud’s doctoral dissertation project. She thinks this has helped her the most.

Sønsterud deems it best not to get too hung up on any single treatment regime.

“Research shows that most of these work, but we have to find out what works for which person. So, as speech therapists we have to dare to try out different approaches instead of running everyone through a particular programme.”

Broken dreams

A Norwegian association for stutterers (NIFS), Statped South-East and the Oslo and Akershus University College conducted a survey among persons who stutter, aged 18 to 72. This was incorporated in a master degree thesis analysing how stutterers evaluate their lives and situations.

The majority reported that stuttering has been an extra burden for them. Most think their lives would have been different if they didn’t have this affliction. Some would have opted for other fields of education and lines of work.

Sønsterud’s impression, seen in her PhD work, is that many really do feel barred from realising their dreams because of their stuttering.

“I see that many refrain from pursuing opportunities they would have preferred. Fortunately, many have found tools for dealing with it and have followed their dreams.”

Berit Løkken has not allowed herself be restricted by her stuttering, even though she has had to struggle to expand her access to synonyms for technical terms as an engineer.

Or some that are not so technical: Her job entails calling customers and giving oral presentations for the firm VWR International, where she sells chemical products for laboratories. She has constant trouble with the word “product”, so she often just substitutes it with the word “article”.

A better life

As the years have gone by, Berit Løkken has learned to live with her stuttering.

“I’ve grown calmer and better balanced as a person, so things have become easier. But there are still times in life when everything gets tough. Then I need to spend a colossal amount of energy to get through the day,” she says.

However, she sees has a positive spin on her debility.

“Everyone encounters challenges in their lives. For me it’s been stuttering. It could have been something much worse.”

Translated by: Glenn Ostling