Our journey with Selective Mutism (SM) began back in 2001 when Daniel started preschool, at the age of 3 years 9 months. He had been a fluent speaker from the age of 2 and had never shown any difficulties with regards speech and although he had never been particularly outgoing (but neither are my husband and I) he had been able to talk freely to family friends and the people behind the counter of our local shops. However, to Daniel, starting preschool was quite a traumatic event and he never really settled. At the time, I didn’t really know the full extent of it and just thought he was shy. His biggest problem was the fact that he couldn’t ask when he needed the toilet there, and so would have accidents most days, which the preschool didn’t show much support or patience with.
When he began primary school, it became more apparent that there was a problem. Daniel was unable to speak to anyone there, he wouldn’t join in with PE or stand up with his classmates in assembly for the songs. Within the classroom, he was observed and it was recorded that he tended to give a sly grin when an adult was watching, that if he did manage to talk to a friend he would immediately clam up as soon as he thought an adult could hear him. It was decided that the problem was behavioural and that he was being manipulative. The school brought in the Educational Psychologist (EP) to assess him and no real diagnosis was made, or any suggestions of solutions.
So, we muddled through and found different ways to help him within the class, but still not really knowing the cause of his problems. One of the main issues in the first couple of years in school was teachers not being able to assess his reading (which he was, in fact, well above average for) so we devised our own plan, which we would later find out was known as a “Small Steps” programme. We began by him recording his reading at home and then taking the cassette (as it was in those days) in for his teacher to listen to on her own and then he started to sit and share it with her. We then took the cassette recorder into school (we used his child’s one from home, as he knew how to operate that one to avoid any other complications) and he began recording his reading in a quiet area of the classroom and gradually he moved closer and closer to an adult. By the end of Reception, he was able to quietly read a book to his teacher. However, with the move to Year 1 there was some regression and Daniel, found it impossible to answer the register or read a book aloud.
Looking back to those early days, there are several times when I have felt guilty for the way I dealt with Daniel’s SM, mainly through ignorance, but also sometimes pressure from other people. Reading in school was one such example. Towards the end of the autumn term of Daniel’s Year 1, the headteacher approached me and said that as Daniel was refusing to read with a teacher, something needed to be done and basically gave the ultimatum that either he needed to read to the teacher that week or he would miss out on his class Christmas party and spend the time in the headteacher’s office! What was I to say?! If only I had the information then, that I have now! Sadly, he didn’t manage to read to his teacher, and yes, he did miss that party, but he didn’t even seem to mind.
I never held with the idea that his behaviour was “manipulative” or that he had a behaviour issue as that just didn’t fit with the Daniel I knew, but it wasn’t until he was about 7 that I stumbled across Selective Mutism (SM). Out of desperation, I Googled something like “why can’t my child speak at school?” and came across the charity SMiRA and this definition:
Selective mutism (SM) is an anxiety disorder in which a person who is normally capable of speech does not speak in specific situations or to specific people.
As soon as I read that, I knew I had found a diagnosis! That’s why bribes or rewards (such as the Christmas party as a reward for reading) didn’t work. It wasn’t actually a choice for Daniel; physically could not do it. I began to research as much as I could, but 15 years ago there was nowhere near as much stuff on the internet as there is today, and I had never heard of Facebook! I discovered that when a person with SM is anxious the “freeze” reaction tightens their vocal chords and prevents them from being able to speak. I took the small amount of information I had into school and they agreed that it certainly sounded like SM. The next problem was, though, that no one had heard of SM let alone know how to deal with it. As a primary school teacher myself, I was surprised that I had never come across it, especially as estimates are that 1 in 150 children suffer with it, many undiagnosed. Again, the EP was approached for support, as was CAMHS but nobody really knew how to treat it. We were told by CAMHS “we’re not sure what we can do for him if he won’t talk to us”! So began my quest to find out as much as I could and to pass the information on to school.
By now, the previous head had moved to another school and I found a lot of support from the staff. Unfortunately, we were all learning as we went along and so we didn’t make the progress we should have done. But Daniel was happy in school, he had a few close friends and with staff focusing on building a good relationship with him and gaining his trust without the pressure to speak, they began to hear his voice.
When Daniel was in Year 5, we started to prepare for secondary school. Where we lived, we had a choice of two schools and so we made a point of visiting them both on their open days and I had phone conversations with the SENCOs to find out what they knew about SM and how they would support my son. In Year 6 when his place was confirmed at our chosen school, he had extra visits from the SENCO and then, closer to the end of the summer term, from his form tutor. This all helped to make the transition as smooth as possible, although it was still incredibly hard for him.
At secondary school, there was the added complication of multiple teachers and moving around for different lessons. Daniel was offered the opportunity of going to Learning Support whenever he needed it, especially at break times but, like many people with SM, he didn’t like anything that singled him out or made him different from anyone else. He just wanted to blend into the background and to not be noticed by anyone. Because of all the different teachers that were now involved, I decided the best way to help Daniel, was for me to make contact with each of them via email, explain what SM is (and isn’t) and how they could help Daniel. Although I knew the SENCO had all this information, with the best will in the world, I know how easy it is as a teacher to maybe not read something carefully enough or to forget little bits when you are given so much information. Some teachers tried hard to understand and build a relationship with Daniel and they were the ones who were the first to hear his voice, and so I was able to email them with suggestions for the next “small step”. Those who tried to push him towards speaking just increased his anxieties and made it harder for him.
Although he never really overcame SM whilst at school, there were some teachers he was able to hold a bit more of a conversation with. One of these was a maths teacher who would give up his break times to work with Daniel after his classmates had left. They would stand together at the whiteboard and look at a maths problem side by side, thus avoiding any eye contact. The maths became the focus, rather than Daniel and so his anxiety was reduced, thus enabling him to speak and talk through the maths problem. Daniel was very fortunate to have him as a teacher for all five years of Key Stages 3 and 4.
What many people don’t realise, is that SM is not just about speech but can affect all areas of communication. Over the years, teachers suggested he used a whiteboard to show his answers, or gestures or symbols to request things such as the toilet. However, this singled him out as different from his peers and drew more attention to him and so he was never able to do that. In secondary school, he found it hard to construct an essay, despite having all the background knowledge of the topic and anything that involved expressing feelings or opinions was always impossible. Now however, in his early 20s, he has overcome SM and for the last couple of years, he has been working for a Christian charity, writing magazine and website articles. This has involved spending 3 months at a time in countries such as Albania and Ukraine and interviewing people about their experiences in order to write about them. He still has underlying anxieties but has learnt strategies to cope with them and has said during the Covid-19 restrictions that he misses not being able to travel and meet people – something I never thought I would hear him say when I looked at that timid little boy 15 years ago!
Catherine Bates. (Teacher & Mum of an ex-SM young person)
How can No Panic help? No Panic’s Youth One-to-One Mentoring Recovery Programme is a 6 week, one hour per week telephone course with a No Panic Mentor. We use cognitive behavioural therapy to develop an understanding of the relationship between thoughts, feelings, actions and physiology. Find out more……