International Stuttering Awareness Day is intended to raise public awareness of stuttering, which affects 1% of the world's population. This year the awareness day falls on 22 October.

A stutter, or stammer, can occur for many different reasons. Here we focus on three conditions that can affect the way that people communicate.

Aphasia

Aphasia is a communication disorder affecting 350,000 people in the UK – speaking, understanding, reading, writing and even using numbers can all be a part of it. It is complex and highly individual, can be mild or severe, can vary day to day and within a day, and numerous influences such as the environment or the way people behave can make it worse. As communication is at the core of most human activity aphasia can have a devastating effect on people’s lives making even the most seemingly simple everyday activities difficult or impossible; reading a get well card, writing an email, getting money from an ATM, following a recipe, asking for help, ordering a takeaway, reading road signs, following a TV programme, the list is endless.

Caused by damage to the language centres of the brain, most often a stroke, it can happen at any age. Speech and language therapy can help improve language skills and when this support ends, there is often a perception that no more can be done. However, we know that the brain can respond and improvements can continue for many years.

Everyone with aphasia is different and needs highly personal support, however, some simple changes help most people -

  • Ask what helps
  • Speak in short phrases, using simple language and simple words
  • Give time, to process what you say, and to respond in whatever way suits, don’t fill in unless you are asked to help, and don’t interrupt
  • Look as well as listen, facial expressions gestures and body language can tell you a lot.
  • Use all forms of communication to help with understanding and expression – gestures, drawing, writing, pointing are also ways we communicate, its not all about speech
  • Reduce background noise and distractions
  • Keep trying.

About Speak Easy

Established as an aphasia specialist charity in 1985, Speak Easy is an internationally renowned expert at long-term support for people with aphasia and their carers. Their speech and language therapists, and people with aphasia craft activities, have a benefit, supporting people to develop communication strategies, confidence and skills that make a positive difference on their lives with aphasia. They create opportunities to help people get back to doing activities that add quality and purpose to their lives. Progress can be slow but their members can achieve things they previously thought impossible. People with aphasia, as staff and volunteers, help design and deliver the activities, giving them the opportunity to improve themselves along the way. Carers of people with aphasia also get help at Speakeasy; by developing communication skills to have better conversations, with access to information about living healthily and support for looking after themselves.

A speak easy community event

Their members say there is nowhere else like them, one couple commented ‘this charity rescued our lives. There are some other aphasia organisations in the UK each with their own focus and type of activity; contact Speakeasy for more information.

www.speakeasy-aphasia.org.uk

Actions speak louder than words - Paul White from Hidden Disabilities Sunflower shares his father's experiences of Parkinson's

“Dad’s journey with Parkinson’s began in his early 60’s. With Parkinson’s being a degenerative condition, as he aged, his symptoms got worse. Of all Dad’s symptoms, alongside his loss of mobility, the one he found most frustrating was his stutter. Parkinson’s is a neurological condition that leads to a reduction in the production of dopamine. Dopamine is the chemical used by the brain to produce smooth, purposeful movements. So along with movement, it affects the facial muscles used to produce speech. Apparently, Dad stuttered when he was a child, and as Parkinson’s developed more, speech became very challenging. He regularly attended speech therapy and they provided breathing strategies and exercises, which did help but was never going to redress the balance caused by his condition.

Photo of people in fancy dress

Dad was always a joker, with a smart comment or silly story. He would continue to tell his jokes, but as he got closer to the punchline, his stress levels would increase and his stutter would get worse. So Dad's jokes became visual. His attending a family function in fancy dress was common. This meant his stutter didn’t get in the way and he still got to do his most favourite thing, which was to make people laugh. Phone calls were a challenge, but we spoke regularly on the phone, as not to do so would have been isolating.

Personally, I have learnt patience and understanding from my conversations with Dad. Consciously ensuring I did not ‘butt in’ when he was struggling to speak and letting him finish.  And, of course, always remembering to laugh at the punchline."

Tourette Syndrome

Tourette Syndrome is a neurological condition that causes a combination of involuntary vocal noises and movements called tics. Tourette’s usually presents in childhood and improves in adolescence, but unfortunately not in every case. It can range from mild to very severe. Simple tics are quite common in children and often resolve without any treatment.

Many individuals with Tourette Syndrome experience additional, co-occurring neurobehavioural problems (how the brain affects emotion, behaviour, and learning) that often cause more impairment than the tics themselves. These are referred to as co-morbidities and include conditions such as:

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Obsessive Compulsive Disorder or Behaviours (OCD/OCB)
  • Anxiety
  • Learning disabilities
  • Behavioural or conduct issues
  • Problems falling or staying asleep
  • Social skills
  • Sensory processing issues.

Although most individuals with Tourette’s experience a significant decline in motor and vocal tics in late adolescence and early adulthood, the associated neurobehavioral conditions may continue into adulthood. This can often be exhausting and frequently misunderstood, as Kez Symock explains in the Sunflower Conversation 'Don't judge me'.

Kez only received her Tourette's diagnosis in 2020. The tics started when Kez turned 14 at the onset of the Covid-19 pandemic. Kez believes that the coronavirus crisis was very much the main trigger of her tics developing. Kez and her Mum, Benedicte, have attributed the name 'Montana' to her series of tics. Montana can be foul-mouthed and Kez finds that once Montana gets going, one tic will then set off a series of tics that can go on for a really long time.

For Kez, it is almost surprising that not everyone is aware of Tourette Syndrome. As for Kez, this is her normal, her world, but it's not everyone else's. So when people appear shocked by the way she speaks or her tics, it throws her slightly and she becomes confused by their reaction. This is why Kez wears the Sunflower. It helps her when she freezes or is unable to articulate herself clearly. The Sunflower gives Kez the reassurance that people will recognise that she has an invisible disability and, therefore, won't judge her, will have patience and give Kez the extra time she needs. In the words of Kez, “If society could just have compassionate awareness of the fact that some of us have different lives, that's all we're really after.”