I had selective mutism (SM) from as early as I can remember. Selective mutism is a severe anxiety disorder which prevents you from speaking in certain situations. SM most often develops between the ages of 3 and 7. People with SM freeze in certain situations, and can’t maintain eye contact. Sometimes their throat goes tight so they physically can’t speak. They also have frozen and stiff body language, and sensitivity to noise and crowds. SM is sometimes mistaken for autism because the symptoms can make the person appear that way, but the person with SM is not necessarily autistic. They can also appear as though they have a learning disability because they are expressionless, but people with SM often have above average intelligence.
Because of my SM I was paralysed with anxiety, and therefore unable to speak outside of home. When I stepped outside the door, heaviness would descend on me, causing me to move slower and weigh me down more and more as I approached school. Once at school I would find myself standing still and feeling paralysed. I would walk to wherever I needed to go if I had to, then find the nearest corner or seat, and either stand or sit still watching others talking all around. As far as speaking, the nearest thing I can compare is like a dentist injection where your face goes numb and the muscles won’t work. It was like having one of these injections in the part of my brain that controlled my ability to speak.
I would stay like this all day. I couldn’t ask to have my basic needs met such as putting my hand up to go to the toilet, or for a drink, or if I had forgotten my lunch money, or if hurt or bullied. I couldn’t participate in lessons, or play with others in the playground. Then, as soon as I came out of school to walk home, the heaviness lifted and I could speak again.
As a 4 year old, you can’t really explain what is happening when an adult asks you why you won’t talk at school. You think how you feel is how everyone feels. You think what happens to you is normal, even if it isn’t. At that age you don’t know any different. People thought I might be deaf, I might be autistic, I might have a learning disability. They did all the tests and none of those things were found. Consequently they decided it was a behavioural issue that needed correcting.
Teachers did not know what to do. They encouraged me, disciplined me, got frustrated with me, asked me why I behaved that way and got no answer from me. They sent me to the educational psychologist and the behavioural-emotional unit and they didn’t know what was wrong either. Back then, SM was not an official diagnosis so they had no checklist to match my symptoms with. I was trapped in isolation, and I didn’t know how to get out of the trap. It felt beyond my power to escape from.
Teachers would try and encourage my peers to include me, and in the end they resented it because they couldn’t get a response from me. As a result, I spent lots of time clock-watching in empty rooms whilst others went off to chat with friends. People gave up inviting me places because I would just stand silent and make them feel awkward. I was watching the world around me as an outsider.
I was still stuck when it was time to leave school at 16. I had seen my peers develop, grow, make friends, have fun all around me, but I hadn’t passed “go”. I had spent my school life going to school, not communicating, and going back home at the end of the day not having engaged or spoken with anyone. I was very delayed in my social and emotional development compared to others of similar age. As I was approaching adulthood, my chances of getting a job and having a normal life hung in the balance, and I was also becoming very depressed because I was fully aware of my inability to function in the adult world.
It was a Christian family who helped me on my way to recovery. They felt it was right to have me come and live with them when I had just turned 19. I had very little communication; I mainly used shoulder shrugs and gestures, body language and facial expressions although I did speak the odd word. Things like saying hello, goodbye, please and thank you were incredibly difficult. Their response to this was unlike any I had experienced, in that they sent me constant messages that I was loved and accepted unconditionally, and they didn’t feel awkward around my silence. After a couple of weeks the heaviness and paralysis began to lift. This was due to them reducing the pressure to speak and I felt safe around them.
One day, I managed to say my first sentence to them – “I want to be able to talk and be normal”. It was a desperate plea that I had wanted to make known for all those years, and I had managed to verbalise it for the very first time. This was just the beginning of a long road where they were to support me, nurture me and teach me to interact, and learn all the skills I had missed out on learning whilst growing up. Eventually they unofficially “adopted” me as part of their family. They supported me through many anxiety issues which arose as a result of my past isolation, including anxieties so severe I couldn’t visit my own family or be left alone without supervision. They are still my family now and we are as close as ever.
Fast forward a few years, and I was also diagnosed with OCD (obsessive compulsive disorder) as well as having C-PTSD (Complex Post Traumatic Stress Disorder). This is something I am still navigating my way through, and I write about in this blog.
It has taken me a lot longer than others, but gradually I got to the place where I can live independently, and I have come further than I ever expected. I am now married, and have a job where I have met very lovely and supportive colleagues who have helped me more than they will know. Anxiety is still part of my life, and a battle I will possibly always face, but I now have friends and family behind me, and most important of all I have found my voice. It is a great feeling to have friends and colleagues who I feel part of and included. I feel they genuinely want me around and don’t feel awkward around me. No more hours of isolation in empty rooms, no more clock-watching and people-watching; now I no longer feel isolated when I come home, because people are just a phone call away – all because I can talk.