'Teachers made me stand up and would shout at me when I didn't say a thing'
Selective mutism is an extremely rare illness which makes sufferers unable to communicate with people in certain situations. Ballymena woman Shannon Thompson, who was struck by this debilitating condition when she was in primary school, talks to Karen Ireland.
Imagine not being able to communicate with a work colleague or someone in a shop - anyone outside of your immediate family circle. This is what happened to Ballymena woman Shannon Thompson, now 21, when she returned to school one year after the summer break.
She was suffering from a very rare illness called selective mutism, an anxiety disorder which mainly affects children aged between three and five.
The frightening symptoms mean the sufferer freezes and is unable to communicate with people and surroundings which are unfamiliar to them.
It is estimated that this relatively unheard of condition affects one in 150 children, around the same as autism, but it isn't talked about as families do not know what it is - therefore it often remains undiagnosed.
While most children grow out of this isolating condition when they are about eight or nine, without the right intervention some cases can last into adulthood.
Lindsay Whittington, UK co-ordinator with Selective Mutism Information Research Association (SMIRA), who works with thousands of cases worldwide, says there is no known cure, just forms of treatment which can be used.
"This is an illness which affects one in 150 children, but there is very little awareness of it," she says.
"The condition prevents children from interacting and learning normally at school, which can be debilitating and detrimental to their lives and their family.
"Intervention is the best tactic and it must be faced in small manageable steps. The first step is referral to a speech therapist to rule out any underlying problem. Once that is done, the speech therapist and a child psychologist can start to work with the child and help them.
"We do have cases in Northern Ireland which we are working with, but because the child is vulnerable and the parent is very protective it is not something they openly want to discuss."
She adds: "SMIRA exists to support parents and to provide them with information so they know how best to handle the situation and their child.
"The most important factor is not to feel isolated and to know that they are not alone, but that others are going through the same thing.
"The organisation then signposts the best places to go for help and offers practical advice."
Shannon Thompson (21) is from Ballymena. She works in retail and lives at home with her mum Carol (56). She says:
When I was in primary two, I developed selective mutism at the end of the summer. During that period I only saw one friend, Megan, in two months.
When I went back to school it was as though I had forgotten how to talk to the other children. I hadn't spoken to them all summer and I couldn't find a way to speak to them when I returned.
Rather than answer the teacher, I would just whisper things to Megan which she would relay back to the teacher. During this time, Megan was my lifeline.
The teachers spoke to my mum and dad about my silence, but at the time everyone put it down to shyness.
I would speak when I went home from school and would talk to my parents and siblings, but that was it. I wouldn't speak to my cousins or other family members. I just couldn't talk. It was as though I would just freeze.
Despite this, mum said I was lively and chatty when it was just my immediate family.
It is hard to explain what this condition was like or how frustrated it made me feel. I remember trying to speak, especially in class, but nothing would come out and I would just end up miming the words.
The condition became more and more frustrating for my parents and my mum admits now that it really got her down as they didn't know what to do or where to turn.
My parents took me to the doctor who referred me to counsellors and therapists. I even had people coming to the house trying to get me to play, but I wouldn't speak.
This went on throughout primary school and Megan was the only person I could speak to in school.
Other people hadn't heard my voice and I couldn't get it to come out, which was very upsetting.
I can't recall if I was ever properly diagnosed with selective mutism - I think it was just something my family and I found out later as we read more into my symptoms.
In the end, it was Belfast hypnotherapist Alan Gilchrist who helped me. At the consultation I was hypnotised in a bid to find a solution to my silence.
He worked with me and gave me tapes which I would listen to at night to help me relax. I did this all summer after P7 to prepare for high school.
When I went to high school at the start it was very difficult. Some of the teachers didn't understand what I was going through and they would make me stand up to answer questions and then shout at me if I didn't say anything - but I couldn't. It was really embarrassing.
Then one day I just found myself able to speak to another girl and then slowly another one. It started out as a whisper and then I was able to speak to others.
Things changed then and completely turned around for me and I found myself able to speak to everyone - it just happened. I was able to start making friends and could talk to anyone.
It was like a switch had been flicked on inside me and I was able to communicate.
My mum and dad split up when I was in high school, but I was okay and was still able to talk. The upset didn't bring the mutism back.
I felt stronger and proud of myself and as I got more confident I talked more.
Now, I am able to speak to complete strangers everyday in my working life.
I work in a clothes shop and I have to talk to people when they come in. I love my job and don't have any problems with talking to customers.
Selective mustism is a misunderstood illness and there is very little support out there for people who have it.
I met Alan Gilchrist a few years ago and I was able to tell him how much he helped me, but not everyone might consider going to a hypnotist.
Now I know it wasn't my fault I ended up with the condition - it is something out of your control because it is an illness.
There definitely needs to be more support and more understanding. I am happy to share my story if it helps one young person.
Further information about SMIRA can be obtained at www.smira.org.uk
How to tell if you may have this rare illness
Characteristics of someone suffering from selective mutism:
- shyness, social anxiety, fear of social embarrassment and/or social isolation and withdrawal
- difficulty maintaining eye contact
- blank expression and reluctance to smile
- stiff and awkward movements
- above average intelligence, perception or inquisitiveness
- creativity and a love for art or music
- empathy and sensitivity to others thoughts and feelings
- a strong sense of right and wrong