Selective Mutism: My Treatment and Ongoing Recovery

When it comes to overcoming Selective Mutism, there is no one quick fix. It is not just a case of going to therapy for a few sessions and then you’ll suddenly be able to talk to everyone. Selective Mutism can take years to overcome. I started my treatment at 16, and now at the age of 22, I am still not completely over it.

I suppose I should start from the beginning, including the failed attempts…

One of the first things that people believed was causing me to not speak sometimes were my tonsils. I would constantly be getting tonsillitis and it was thought that getting my tonsils removed would help me to talk all the time. They needed to be removed regardless of whether or not it was going to help me to talk, but of course it did nothing to help my SM.

I was around 5 years old when I received my Selective Mutism diagnosis. Back then, no one had a clue what was going on, they just presumed I was either refusing to talk or that I was just shy. There wasn’t much awareness about Selective Mutism back then so no one who tried to help me had ever heard of it; for them it was all just guess work.

I remember being in Reception at school and having an educational psychologist come into the school. I had spoken to a few friends when they had come to my house for tea and I remember those friends being brought into a few sessions with me. I think maybe they thought that if I spoke to them at my house, they could also get me to speak to them in school. However, since Selective Mutism isn’t just about who’s around, but also the place/situation you are in, this didn’t work. I was able to talk excessively to a friend if they came to the safe space that was my home, but at school where my anxiety was extremely high, I was unable to talk to them.

They also tried having my Mum come into school to do the group reading. They thought that since I was able to talk to her all the time at home that I’d be able to do it in school as well if she was there. However, this didn’t work. In school, I was so anxious that I found myself unable to even read by whispering in her ear.

I think it was after that that they got CAMHS involved. For 2 years, I was given play therapy where I remember writing stories, doing paintings and having the therapists play with me. This did absolutely nothing to get me to speak and after the 2 years that I was there, they said that they didn’t have a clue what it was going to take to get me to talk and so I was discharged. They said there was nothing more that they could do for me and that I’d probably just grow out of it one day. I later found out that this treatment had been treatment for shyness; not anxiety.

After that, I was left for years without ever having anyone intervene to help me talk at all. Since I didn’t have a clue what was stopping me from being able to talk outside of my house, I spent all that time hoping that what CAMHS had said all those years ago was right; that I would eventually just grow out of it. I would get up every single day hoping that that day would be the day where I would just suddenly grow out of it. That day never came. When I reached 15, I realised how naïve I had been for all that time. I realised that if it had gone on for as long as it had, I was never going to grow out of it. Whatever it was, it needed some kind of treatment, but without knowing what it was that was stopping me from being able to talk, I didn’t know where to start.

That was until one night, I found out exactly why I wasn’t able to talk. I had always known that I had something called Selective Mutism but since I knew that I wasn’t selecting/choosing to be this way, I had always believed that I had been given the wrong diagnosis. I found out that what I had actually was called Selective Mutism and that it was a severe form of social anxiety that stopped you from being able to talk in certain social situations due to the severe anxiety making your entire body tense up; including your throat muscles. Prior to this, I didn’t even know of the existence of anxiety disorders despite having had one for my whole life.

When I began going to CAMHS at the age of 16, I started off seeing a male psychologist. He was only temporary until a new psychologist arrived. He taught me some relaxation techniques which involved tensing up my muscles and then slowly releasing the tension in order to relax them. My homework was to practice everything I had learnt in each session at least once a day at home. When it comes to treating Selective Mutism, it is important to lower the anxiety first and then the talking will follow. Relaxation and anxiety do not go together; using relaxation will help to lower anxiety.

Then, at the beginning of 2011, the new psychologist arrived. Straight away, she started to tackle the actual talking side of things. To help me to relax, she taught me some diaphragmatic breathing and to help me to do this, she would play some music and when the notes went up I would breathe in, and when the notes went down, I would breathe out. This helped to make sure I was breathing at the correct pace. I would also have a heart monitor placed on my finger just like the ones doctors use when they check your heart rate. This would be hooked up to a laptop where my therapist would be able to see when my heart rate was going up or down. Once the breathing had slowed down my heart rate, we would begin all the weekly tasks.

My therapy was called desensitisation which is a technique that is often used to treat phobias. It works at graded exposure to whatever the phobia is. With me, of course the fear was talking, so the treatment involved starting off with making sounds. When you have Selective Mutism, it is very difficult to make any sort out sound; even coughing. So to start off with, she left the room whilst I made a coughing sound into a Dictaphone. She would then come back into the room where she would listen to it. Then, she would stand outside of the door whilst I coughed, then with the door open and then she would come into the room. This was the process that was done for every sound that I ever made.

The week after, I was set the task of whispering a letter sound. This time, because I knew I was actually going to be whispering, my anxiety was extremely high; more so than it had been the week before. This meant that the whole process took a lot longer than it had the week before with the cough. However, after a lot of time and patience and with the same desensitisation technique that we used the week before, I was able to do it. I may have only whispered a letter sound, but it was the first time I had spoken to anyone in any way other than my family for years! It was at this point that I knew that this time was not going to be a failed attempt like the previous attempts.

After this, I went on to whisper one word, then two words, then three words and eventually sentences. Eventually, I was also able to whisper spontaneously and have proper conversations with her. It took a very long time, but eventually I was able to talk without whispering. At first it was still soft spoken, but it wasn’t until just before I was discharged that the volume crept up to the volume of my usual voice.

However, I was going to have to venture out of the therapy room if I was going to be able to talk in the real world. After a while, my anxiety had been greatly reduced and one day, my task was to go and ask the secretary at the Reception for a pen. As it was the first time I had ever done this, we did spend a lot of extra time bringing my anxiety down with the breathing techniques, but to my amazement, when I went to the Reception I was able to do it! Gradually, as I became more and more comfortable, I was able to go in and ask for more than one thing and after I was completely comfortable doing that, it was then time to go into the real world. It took a lot of preparation, but I started off being able to say thank you after buying something in a shop, even if it was so quiet that the other person wouldn’t have heard it, but that didn’t matter. What mattered to me was that I knew I was saying it. Then, eventually, for the first time ever and with my therapist there every step of the way, I was able to go into a café and order my own food. Everything just felt so unreal. These were all things I should’ve been doing since I was a very young child, yet here I was finally at the age of 16 being able to do them for the very first time. Never had I enjoyed eating something so much as I did that day knowing that I had asked for it myself. One of the positives to Selective Mutism is that it has made me take fewer things for granted as I know what it is like to not be able to use such a simple thing as my voice.

I had many coping mechanisms and ways of getting round the fact that I wasn’t able to speak. One of which was that I used 12 journey bus tickets that I could just hand over to the bus driver to hole punch the numbers so that I wouldn’t have to say where I wanted to go. These were lifesavers for me because it meant I was able to go to a lot of my CAMHS appointments by myself; without them, I would have had to have had someone come with me. Most of the improvements I had been making were tasks set by my therapist, but one day after buying something in the hospital shop after an appointment and saying thank you a little louder than usual I suddenly had this rush of determination that that day I was going to tell the bus driver where I wanted to go. I had my ticket on standby just in case I wasn’t able to do it but I was so determined that I knew I wasn’t going to need it and finally for the first time, I managed it! I was ecstatic. I had a permanent fixed smile the whole bus journey. I’d said it very quietly, but it was enough for the bus driver to hear me. From then on, whenever the bus had very few people on it and my anxiety levels were low enough, I would make sure I would ask instead of using my ticket. I wasn’t able to ask if the bus was full but the bus from the hospital back home was usually pretty empty so most weeks I was able to manage it.

Soon after this, I started college. My treatment had lowered my anxiety enough to be able to use a whiteboard to communicate with everyone in the class. I was so happy that I was able to communicate with them as this had been something I wasn’t able to do in school, but I wanted to be able to actually talk to them more than anything else. My therapist suggested that I had a friend come to an appointment so that I could begin to talk to them as well as a teacher and around Christmas 2011, that’s exactly what happened. As you improve more and more with your SM recovery, each task you do becomes easier so rather than starting off with a cough or a letter sound, I was able to start off with whispering short words. This was done with exactly the same desensitisation technique that I had used to begin talking to my therapist. My therapist was able to teach my teacher how to do the techniques so that she could use them to help me in college. It is all well and good being able to talk to people in the therapy room, but the therapy room is not the real world; you need to practice the techniques in the real world.

During college, I would go into an empty room with the friend that had come to my therapy session with me. We would practice the techniques until I was finally able to have full conversations with them. Then eventually, another friend was introduced and we once again went through the techniques. This was effectively a cross between sliding in and desensitisation as not only was I going through the desensitisation techniques to talk to them in the first place, I was also gradually introducing another person into the situation. Eventually, the whole class got involved. We would go round the table where no one would be looking at anyone and everyone would have to whisper a word. If I wasn’t able to do it, that was OK, we would try again another day. Eventually, I was able to whisper with them and gradually, I was finally able to talk to every single person in the class by whispering.

A proud moment was when I was sent out of the class for talking. Shocking, right?! Someone with Selective Mutism getting sent out of class for talking?! But I did. As I was only whispering, I did need to increase the volume and one day, for the laugh a friend and I decided to play the game called bogies. (If you’re not familiar with the game, it’s when one person starts off saying the word bogies really quietly and then the other person says it slightly louder and each time it gets louder and louder until one person can’t say it any louder than the other person.) This wasn’t even intentional to help me with the volume; it was just something we just thought would be funny though it actually turned out to be very beneficial to help me to increase the volume of my voice. Although for most people, getting sent out of class for talking would be seen as a bad thing, for me it was one of my biggest breakthroughs yet. Playing bogies on a regular basis actually helped me to gradually increase the volume and before long, through playing bogies, I was able to talk to everyone in the class with the volume of my normal voice.

My college course had 1^st year and 2^nd year students in the same class and when I moved onto my 2^nd year, we had some new 1^st year students join the class. As I had become so comfortable talking in that class, I was instantly able to talk to all of the new students; just as I had been the previous college year. I spent half of my time doing my office course and the 2^nd half doing GCSE work. I had gotten so comfortable talking in the college environment that I was able to talk in the GCSE class despite having not had any therapy with those students. I was able to answer questions if the teachers asked me a question; even in front of all the other students. This was something that would’ve sent my heart racing just thinking about picking up a pen to write down the answer back in school. I even stood up at the front of class and read a paragraph in my Psychology class at the beginning of the year. I never did this again, but the fact that I actually did it once seemed like a miracle to me. If I needed something, I was able to ask the teachers with very little anxiety; something that seemed impossible to do in school, even being able to write down what I wanted.

Towards the end of 2012, it was time to be discharged from CAMHS. I had recently turned 18 and on top of that, my therapist was moving away. I don’t believe I will ever have a therapist better than the one I had in CAMHS. Between the two of us, we made therapy sessions fun and she was just someone that I just clicked with and was able to be myself around. I was able to use humour to help me out with a lot of the tasks that I had to do; humour has been one of the number one things that has helped me to overcome my SM. It was very bittersweet to have to leave; it was very sad because we had worked so well together, but also I had improved so much from when I first started with her.

After being discharged, I did regress slightly. I wasn’t able to handle group conversations as easily; this was something I had gotten fairly good at prior to being discharged. I also didn’t talk spontaneously as much as I had before. I am grateful that I didn’t lose a great deal of progress, but I do wish I had been able to have more time to completely overcome my SM before being discharged. I have pointed this out in other blogs, but I will say it again because of how important it is. If someone with Selective Mutism begins talking in situations where they couldn’t before do not stop treatment, this does not mean that they are over their SM. They need continued treatment until if you had to pick out who had SM in a group of people, you wouldn’t be able to tell who it was. Failure to receive continued treatment greatly increases the risk of regression.

I still have a long way to go as far as overcoming my Selective Mutism goes. Most of my treatment did focus on talking to strangers and new people rather than people I’d known for years but had never spoken to. Talking to strangers is a good place to start because you can have that thought in your mind that if you do anything silly, they’re a stranger so you’ll probably never see them again anyway. I am still yet to receive treatment to help me to speak to people that I have known for years but have never spoken to. Receiving treatment for SM is never easy. Most psychologists do not get taught about SM during their training so there are very few that know how to treat it. However, I do live in hope that I will someday find someone who can help me to overcome the remainder of my SM as well as the multiple anxiety disorders that have developed as a result of my Selective Mutism being left untreated for so many years.

Although I am not completely over my SM, I will forever be extremely grateful for all the things my therapist and everyone who was involved in my treatment helped me to achieve. I could not have done it without them. I wish I could thank each and every one of them but there were so many people that were involved that it wouldn’t be possible. Every single person contributed to changing my life in ways that they will never know and I could not be more grateful for that. I am still not able to live my life as a completely “normal” person, but thanks to the people who helped me, I have now lost count of the amount of people I have spoken to at this point; before my treatment I could only count on just over one hand. If you are someone who was involved in my treatment, just know that no matter how big or small your role in helping me was I will always be extremely grateful for everything you did for me. Thank you.