My Selective Mutism began when I was very young. 18 months old to be precise. It has always been thought that my Selective Mutism was caused by the MMR (Mumps, Measles and Rubella) vaccination, because it was almost overnight that I went from talking absolutely everywhere to showing classic signs of Selective Mutism.
I’d always believed that the MMR jab was the reason behind the cause for my Selective Mutism, I didn’t really understand much about why I couldn’t talk until I was a teenager, so I didn’t really understand what could have caused it. That was until I began to learn more and more about things that can cause SM through Facebook groups (they have been my number 1 support system over the years.) As I mentioned in my previous blog, many people with Selective Mutism have a genetic predisposition to developing anxiety disorders; this makes me think that it may not have been the actual vaccination itself, but it could have been the fear I may have experienced from actually having the injection.
I don’t believe I will ever find out what caused my Selective Mutism. It may have had nothing to do with the vaccination, but rather it could have been something that happened the day of the vaccination that no one even thought twice about. What I do believe though, is that I do have a genetic predisposition to anxiety (I have family members who have diagnosed anxiety disorders) and if it hadn’t have been whatever it was that happened, it would’ve eventually ended up being something else that caused it.
When my SM first started, everyone just presumed I was shy, or that it was a phase that I’d grow out of. However, by the time I got to Nursery my Selective Mutism had progressed to the point where I was only ever able to talk to my immediate family along with a few other members of the family and a few close friends. I would go to Nursery every single day and wouldn’t be able to say a single word for the entire day, apart from one friend who I would talk to in the corner of the playground when no one was there.
When I got to Reception, it was finally realised that this wasn’t just a phase; it was something that was getting worse and worse as time went on. I received my diagnosis – Selective Mutism. However, at the time, there wasn’t much information about SM out there at all. They thought I was refusing to talk.
I was put through several educational psychologists before being referred to CAMHS (Child and Adolescent Mental Health Services.) However, after being with them for 2 years, I was discharged and told there was nothing more they could do for me. I found out years later that I’d been given treatment for shyness the whole time. Had it been known that it was actually severe levels of anxiety that I was dealing with, they may have been able to do something to help me.
Barely anyone ever referred to me with my real name. I was always referred to as “the girl who doesn’t talk.” I didn’t want to be “the girl who doesn’t talk,” I wanted to be known as, Leanne, to be recognised for who I really was and not just whatever it was that stopped me from being able to talk. A question I was asked every single day until my very last day of school ever was, “Why don’t you talk?” I could never understand why. They knew I’d never spoken a word around them so why was this time going to be any different? The truth was I had no answer to give. I didn’t have a clue why I could talk sometimes but not others. I was so confused as to why I was able to talk excessively at home, but anywhere else I was absolutely terrified of anyone hearing my voice, even though I knew there was nothing wrong with it. What a lot of people probably won’t know is that I have never been embarrassed by the sound of my voice in the slightest. All I knew was that I tried really hard every single day to just say one word, even just a little whisper, but it was impossible. Nothing ever came out.
I lived in a cul de sac where my sisters and I used to go out and play with the other children at the weekends and after school. Although there were a lot of children, it was here that I was able to talk freely and be myself around others my age. We would often be out playing with them from morning until bed time where I would chat away with them for the entire day. However, I could never talk to any of their parents and the older I got, the higher my anxiety became and the more of them that moved away, the less I was able to talk around them. Eventually, I was unable to talk around any of them at all.
Every morning from the time I got up, I would be excessively chatting away non-stop. If you had been a fly on the wall you never would have been able to guess that I was any different from any other child. The moment my front door would open, I would instantly become silent. I would step out of the front door and turn into someone that even I didn’t recognise. All of my behaviour seemed to be controlled by my anxiety. I have always said that I have always had 2 sides to me, the real me who is very loud and chatty, and the SM me – the person who I am not! Very few people had ever seen the real side of me and many of them presumed that I was just a very quiet child, when underneath it all I was the complete opposite.
When I was 6, I was severely bullied to the point where I had to move schools because the school showed absolutely no care in the world whatsoever to sorting it out. Unfortunately people who suffer from SM are extremely vulnerable to being targeted by bullies. The only way to deal with bullies is to stand up to them, which is hard enough for most people as it is, but when you’re dealing with SM there’s absolutely nothing you can do to stop them. Your anxiety just gets so high that you just remain completely frozen, unable to move, run away, nothing.
When I got to the new school, everything instantly became so much better than it had been at the previous school. I began communicating with a whiteboard – something the other school hadn’t tried. It was the best thing I was ever given. I was finally able to be myself in school as I was able to talk to everyone using the whiteboard. In fact, I’d never stop writing things down to communicate with people. If the words on the whiteboard had been my voice, I probably would’ve been the loudest kid in the class!
However, when it came to writing things down to any teachers, it was a totally different story. Selective Mutism is not just anxiety about talking to people. It is anxiety about communicating with people. With some people, the anxiety is so high that you are unable to talk to them, but you can write things down to them. With others, the anxiety takes it to a whole new level and you become so crippled with anxiety that you can’t even write anything down to communicate with them.
I was able to talk to friends if they came to my house or if I went to their house. However, as soon as I reached high school at 12 and had to move away from the safe space that was primary school, my anxiety greatly increased and I could no longer talk to anyone if they came to my house. At this point, it had gotten to the point where I was only able to talk to my immediate family and 1 grandparent.
However, one good thing did come out of going to high school. I met, Laura – my best friend of 10 years. She didn’t once ask me why I didn’t talk. She just accepted that it was just the way I was and I couldn’t be more grateful for that. We would constantly be passing notes throughout lessons and even during break times. With her, I was able to be my chatty self through the passing of notes. We used to do everything together, just like any ordinary best friends would; the only difference was that I had to communicate through writing.
However, because my anxiety was so high by this point, I was rarely able to write anything down to anyone else. If she was in a lesson with me and I needed to tell the teacher something, I’d be able to write it down to her and she would then tell the teacher for me. However, if she wasn’t in a lesson with me and I needed something, I would often spend an entire lesson trying to force myself to pick up a pen to write something down, but I was paralysed by extreme levels of anxiety. I could not do it no matter how hard I tried. This meant that if I finished the last page in my exercise books, I was unable to ask for a new one unless the teacher asked anyone who needed one to put their hand up, however this was a rare occurrence which meant I often spent lessons unable to do any of the work that was set through being unable to ask. This sent my anxiety levels up even higher because I then had to deal with the anxiety of what if the teacher called on me and asked to see my work? What would I do then? Sometimes if there were empty exercise books in any of the classrooms, I would pick one up even if I wasn’t even close to needing a new one; stocking up on them meant I didn’t have to deal with the stress of not being able to ask for one. If I needed the toilet, I couldn’t ask, which meant often spending over an hour desperate for the toilet until I could finally go when the lesson ended. It was things such as these that were a daily struggle for me living with Selective Mutism. I know it seems ridiculous to most people who don’t have SM, but this is how extreme the levels of anxiety are when you have SM.
There have been reports of people with Selective Mutism who have broken limbs and they haven’t been able to tell anyone. Even through all that pain, the anxiety is so high that they were unable to alert someone about it.
Unfortunately, halfway through Year 8, Laura had to move to the other side of the country. After this, I wasn’t able to communicate to absolutely anyone in any form. School became so much harder than ever before. Before, pen and paper had been my virtual voice, even if it was just with one person, but now my anxiety wouldn’t let me communicate in any way whatsoever.
After having never been late during the whole of year 7, being late became a very regular occurrence for me. It became a daily struggle to have to force myself to go to school every day. On top of this, anxiety, especially at extreme levels can cause extreme tiredness and it became harder and harder to get up every single day, even if I tried going to bed earlier. On top of this, getting to sleep at night in the first place was a challenge. At the weekends, I would find myself sleeping from anywhere between 14-16 hours a night to recover from all the anxiety I had been experiencing throughout the week at school. I was continuously dragged into the office and told off by teachers who would tell me to just set my alarm clock to an earlier time or to go to bed earlier. I can’t tell you how frustrating it is to be fighting such an extreme inward battle in your mind, but no one on the outside having a clue of just how much you’re going through every single day. I would have to just take it all in; unable to defend myself and have them continue to think that I was just being lazy.
It always baffled me that after I’d been discharged from CAMHS, no one ever tried to continue to find ways to try and treat my SM. I didn’t understand how anyone could watch someone go to school every single day, not say a word the entire day and for them to presume that I was just happy the way I was. Looking back, I think the most heartbreaking thing of all is that they probably thought it was my choice to be this way. They had no idea just how much I was going through every single day. I always wished that someone had done some research on how to treat SM and had stepped in to help me to talk. Please be that person if you know someone in your life who has SM!
What frustrates me the most is that it wasn’t until I was causing a disruption from coming into school late that I was even taken any kind of notice of. If I wasn’t causing any kind of disruption, I was just left to be forgotten about. Though even when they did give me attention, it was only to tell me off, never to try and understand what things might be like from my point of view. If a child is doing things like this, it may not be because they are misbehaving, it could be a problem that you need to get to the root of, not punish them because that only intensifies the problem, it only adds to their frustration. I would even have teachers who would skip over my name when they read out the register because they knew I wouldn’t answer; little did they know that every time my name was called out, I would use every piece of strength I had to try to answer but every single time nothing would come out. When a teacher didn’t read out my name, they weren’t even giving me the chance to even try. On top of that, it made me feel even more invisible than I already did.
As my anxiety made my entire body tense, this included my stomach. My anxiety would be so high before school that the thought of eating something made me feel sick. Then in school, where my anxiety was at its highest level, I would often eat very little or nothing at all. My stomach was so tense that I just simply didn’t get hungry. I can only describe it as what I imagine it’d be like to have a gastric band; my stomach felt so tense that it felt like something was making my stomach smaller so that I wasn’t able to eat very much. Because of this, it would mean that I would all too often be leaving the house at 8am to get the school bus, to getting home at 4pm having had absolutely nothing to eat for that entire time.
When I was 14, I got the internet. From that day onwards, it has been my lifeline. I was still dealing with the SM being worse than ever every single day at school, but I always had something to look forward to when I got home every day. I was able to talk to Laura through MSN every night; before we had kept in touch through letters. Through MSN and Facebook, I was able to chat to people from school for the very first time. In the comfortable environment of my home, and not being face to face with anyone, I was relaxed enough to finally communicate with those I saw every single day who had never gotten to know me in any way beforehand. It wasn’t the same as actually talking to someone, which I longed to be able to do so much, but it did help me to feel somewhat normal knowing that when I got home every day, I would be able to chat away and say the things I couldn’t say throughout the day.
Some people say teenagers spend too much time on the internet and whilst that may be true, for people with Selective Mutism, it can be one of the most useful tools they can get and just after I turned 15, the best thing that has ever come from having the internet, happened. I found out exactly why I hadn’t been able to talk for all of those years. Best of all, I found out it could be treated and there had been people just like me who had received treatment and were now able to talk all the time, just like everyone else. I finally had hope that I could finally find my voice. I also began chatting to others with SM online. It was an incredible feeling to finally be able to talk to people who had gone through exactly the same things as I had for all those years. I finally didn’t feel so alone anymore.
This could not have come at a better time because soon after this, my anxiety reached its all time worst. For years, I had been late for school virtually every single day, but it got to the point where I wasn’t able to get up to go into school until dinner time and eventually more often than not, I wasn’t able to go into school at all. I would be waking up every single day with headaches from the stress of all the anxiety and I had to take painkillers for them every day. Sometimes it would help, sometimes it wouldn’t, and eventually I built up a resistance to the painkillers and they wouldn’t work at all.
I would also get daily panic attacks when I even got anywhere near the front door. Panic attacks weren’t new to me. I’d had my very first one when I was just 11 years old and would often have them on the bus on the way to school to the point where my heart would be beating at what felt like a thousand miles an hour, I’d become extremely hot, my hearing would become muffled, I’d become really dizzy and I would completely black out and wouldn’t be able to see a thing. I never did faint from this happening, but I always felt like I was going to. This was before I even had a clue about even the existence of the word anxiety, so you can imagine being 11/12 years old and have something like that happen to you and not have a clue what was going on; I felt like I was dying every single time. This was one of the things that made me avoid the school bus like the plague and was one of the things that contributed to me being late everyday as it meant I had to walk instead.
After telling my Mum what I had found on the internet, she got in touch with the school who said they were going to get the educational psychologist in to help me. I was so excited for this. I was so excited to finally be getting some help. My excitement soon disappeared. I was told I was going to get sessions with her every week to help me. She turned up for two 15 minute sessions and after that I never saw her again. I was promised help, but was let down, once again.
Then, I went to my GP and got my CAMHS referral. However, I was told they had a 6 month waiting list. 6 months was way too long a wait for me, I was continuously getting worse and worse every single day and I dreaded to think how bad things would be 6 months from then.
Eventually, things became so bad, I found myself unable to go into school at all. I tried so hard every day, but the anxiety and the physical symptoms became all too much. It was making me ill even thinking about going into school. I was so crippled with anxiety that I was unable to leave the house for a whole 2 months; even just going into the garden. The problem with anxiety is it needs to be treated as soon as it starts. If it’s not dealt with right away, (and this includes every single anxiety disorder out there) it can just grow and grow and turn into a much bigger problem than it was to start with. Had I received the correct treatment when I was a child when the SM first started, I would’ve been able to put SM behind me years ago and would have always lived a relatively “normal” life.
The school set me up to go to a small school that was designed to help people who found it hard to go to school for whatever reason to get back into school. The first day I went was the first time I had breathed in fresh air for a whole 2 months. I can’t even begin to explain how much of a relief it was to finally be outside of my front door after all that time, even though it was extremely anxiety provoking. I would go there every Friday with a couple of other girls who never bothered me about not talking. I was always grateful when people didn’t make a big deal out of the fact that I didn’t speak or didn’t even mention it at all. It helped me significantly in feeling relaxed enough to make it out of the door every week to go. We would do very relaxed activities, arts and crafts, girly things, trips out etc. We would also do some school work that we’d missed out on from the school that we had missed. I began to look forward to going every week and I noticed a significant drop in the levels of anxiety I was experiencing on a daily basis. I went there until the end of the school term when it was the summer holidays.
I finally received my letter for my CAMHS appointment. I can’t tell you how excited I was that day. I had waited for what felt like an eternity and finally, I had an appointment. During that appointment, I was told something I had never been told before. “We are not going to give up on you. We are going to help you until you are completely better.” It was the most hope I had ever been given by a professional. I had to fill in the very lengthy DAWBA (Development and Well-Being Assessment) online in order to be re-diagnosed with Selective Mutism and see if there were any other problems going on. Whereas it did take me hours to do, it was worth it for them to know exactly what was going on and for them to help me in the best way possible.
Throughout the holidays, after having had my anxiety levels lowered a little, going back to school began to feel like more of a possibility. Though every time I thought about it, my anxiety levels would go up and towards the end of the summer holidays, I began to have severe physical symptoms of anxiety. One night, I started to get pains in my chest and when I tried to breathe, I felt like I wasn’t able to get enough air in. I tried to do some deep diaphragmatic breathing and whereas this had helped a lot with other anxiety attacks that I had had, it was only making it worse. After it continued on throughout the night, I began to get increasingly worried that maybe it wasn’t just a panic attack. The next day when it still hadn’t improved, I had my heart rate checked by a heart monitor that we had at home. My pulse was 180 beats per minute. This was just after I’d woken up. I immediately went to the doctors, where I was admitted to hospital after they suspected my symptoms were heart attack symptoms.
After staying in overnight and having more tests than I could even count and after them finding nothing physically wrong with me, it was determined that it was not a heart attack, but actually a severe anxiety attack. It took about 2 months for the symptoms of this anxiety attack to completely calm down.
The first day back at school came and to everyone’s amazement (and even my own) I went to school. Although I was about half an hour late, it was still an improvement from not going in at all for 6 months. I did feel extreme anxiety throughout the day and I still wasn’t able to communicate with anyone in any way, but I definitely noticed it wasn’t as high as it was the last time I was there.
However, going in regularly was a step too far for me, and before long I was put onto a part time timetable and had to drop every subject other than English and Maths as those were seen as the most important subjects.
I was supposed to be getting one to one support to help me with my Maths as I was behind from missing so much school, but after waiting week after week and having had no one turn up, I realised it was a complete waste of time. I went to the smaller school that I mentioned earlier on where I was helped with my English, and it was thanks to the teacher who helped me that the only GCSE I came out of school with was my English which I got a C in – despite being made exempt from the speaking and listening and missing most of year 10/11.
I got the results from my DAWBA assessment. I was re-diagnosed with Selective Mutism and also received three new diagnoses; Generalized Anxiety Disorder, Social Anxiety and Agoraphobia. These were all things that had developed as a result of my Selective Mutism having never being treated. It all started to make sense; these things were the reasons why I had been going through so much anxiety. It wasn’t just Selective Mutism that I had been struggling with; it was multiple different anxiety disorders.
In early 2011, a new psychologist arrived at CAMHS and I then began seeing her instead of the previous psychologist I had been seeing. Little did I know, she was about to completely change my life for the better. I will talk more about the specific things she did with me in a later blog, but after only seeing her a few times, I began to be able to whisper to her. First starting off with simple letters, but eventually words and even sentences and amazingly in the end I was able to have full conversations with her and even began to speak spontaneously. After only talking to a total of 6/7 people for most of my life, I had finally added another person to the list of people I could talk to. I knew from that point on that this time, it really wasn’t going to be a letdown like all the previous attempts had been.
Every week, I would improve more and more and before long she helped me to go into a café and for the first time ever, I ordered my own food. This was something I had never even imagined I’d have been able to do. From then, I began to be able to tell bus drivers where I wanted to go and say thank you after buying something in a shop. At first, it was barely audible when I said thank you, the other person wouldn’t have even heard it, but to me it didn’t matter. What mattered to me was that I knew I was saying it, even if it wasn’t very loud.
After I left school, I wasn’t sure what the next step was. I didn’t think I had enough GCSE’s to do any courses at college, but after having help from the careers advisor at the job centre, they helped me to get onto an office course in college that you didn’t need any GCSE’s for. In the meantime, I had 4 months from leaving school until starting college. So many people had always said that I could write a book on all the things that I’ve gone through with having SM, and during those 4 months, that’s exactly what I started doing. To date, it’s currently almost 60,000 words. However, once I started college I began to have less and less time to work on it. I do plan on eventually finishing it when I find the time.
Going to college was the best decision I could’ve ever made. Never in my life had I met a group of people more supportive and understanding than they were. I had teachers that went above and beyond any of my expectations to help me to overcome SM. Unlike school, I looked forward to going every day; I couldn’t wait to go every single day. Through all the treatment I had been receiving at CAMHS, my anxiety had been significantly reduced and from the very first day of college I felt comfortable using a whiteboard to communicate with everyone, even teachers. We would all go into town together after college and would meet up most weekends. I began to have the somewhat normal teenage life that I had always longed to have.
Christmas of 2011, I had one of the teachers and a friend come to my CAMHS appointments with me. My therapist helped me to whisper one word to each of them. It felt like the best Christmas present I could ever have gotten and after my teacher was taught how to do the techniques by my therapist, she went above and beyond to make time to do them in the class quite regularly and miraculously, before long I was whispering full conversations to every single person in the class.
Gradually, the volume eventually crept up and I was talking using my normal voice to everyone in the class. I now not only had a group of friends to meet up with after college, but I could also use my voice to talk to them, just like any other ordinary teenager. Everything I had ever wished for was finally coming true.
I then went on to do another year at college. Half of the students had been 2nd year students so they had to leave and we got some new 1st year students. I was instantly able to talk to every single one of them as if I’d known them for years.
I spent half of my time doing 2nd year office work and the other half of my time at college doing GCSEs during my 2nd year at college. I wasn’t as talkative in the other classes as I was in my office class, but the main thing was that I was able to talk whenever I needed to. I was even able to answer questions if the teacher called on me – something that would have sent my heart racing to even pick up a pen to write down the answer back in school. I even managed to stand at the front of my psychology class and read a paragraph at the start of the year. It was incredible just how far I had come in such a short space of time.
This was the happiest time in my entire life. I’d never felt so anxiety free in my entire life. I hadn’t had a clue what it was like to live with such low levels of anxiety before this. It felt like I could breathe. I still wasn’t able to talk to a lot of people, (anyone I knew before I started my treatment and weren’t involved in my treatment I couldn’t talk to, but new people were usually fine) but during my college day I was able to talk to almost everyone I came across. I was finally able to be who I really was underneath all that anxiety; chatty and confident.
However, just after I turned 18, I had to be discharged from CAMHS. They usually only take people on until they’re 16, but because I only just got the referral just before I was 16 they decided to keep me on until I was 18. I did regress a little bit after this through not having any continued treatment and wasn’t able to talk as much as I had before. For example, I wouldn’t optionally put my hand up to answer a question in class like I would’ve done before being discharged, but if I was called on I was still able to answer the questions. I also began to struggle to talk in groups of people which I had gotten fairly good at before being discharged. I am thankful that I didn’t lose a great deal of the progress that I made, but I did grind to a halt and didn’t manage to improve any more after being discharged. I do understand that I had to be discharged, I was over 18 and on top of that my therapist was moving away. However, in usual circumstances, treatment does need to continue until the person who has SM is talking to everyone. They need to be talking just like everyone else so that if you were to pick out which person had SM out of a group of people, you wouldn’t be able to tell which person it was. Do not assume that when they start talking, even minimally that it means they are completely over SM and that treatment can stop. It needs to continue until they are 100% over their SM otherwise regression can/will happen, just like it did with me. To this day, I am still unable to talk to anyone that I knew before I started my treatment that wasn’t involved in my treatment.
I finished college in June 2013 and achieved a C in my Maths, a C in my ECDL (European Computer Driving Licence) and most incredibly, an A in my Psychology. These are things that I always had the ability to do, but I could never have achieved whilst I was in school experiencing all of that anxiety. I was so anxious that I wasn’t able to concentrate on absolutely anything to even take anything in and learn anything in the first place.
If there is anything that you take away from my story, it’s that a positive environment is the key to overcoming Selective Mutism. Everyone around the person with Selective Mutism needs to be involved. Everyone needs to know how damaging it can be to try and force someone with Selective Mutism to talk. They need patience and understanding from those around them. Most importantly, when they do talk, do not react. The attention can make them take 10 steps backwards and all that hard work will be gone to waste. Just act like it’s the most normal thing in the world for them to talk, which really talking is one of the most normal things in the world. If you do all of those things, you will help someone with Selective Mutism more than you will ever know!
These days, I still consider myself to be battling Selective Mutism. Although I have improved leaps and bounds over the years, I still have a long way to go. I am also still yet to receive any help for any of the other anxiety disorders I have; I’ve developed about 7 different anxiety disorders in total due to my untreated SM. Unfortunately I am still fighting a battle to get help for my SM. I’ve so far had no such luck with adult services as most of them have never even heard of SM. This is something that needs to change so that no one ever has to go through any of the things that I had to.