Today we have a special guest writer. Her name is Julie, and she grew up with selective mutism. For most of her school life, she was shackled by silence until a kind family took her in and guided her to break those chains. The most striking thing about her story is that after she graduated from school, she could not fit in with the rest of the community because of the long term effects that SM had on her, and she became very depressed.

For those of us who have been through hard times, this could very well be a snapshot of a time when we were uncertain about where our lives were headed. It is a frightening thought. But there is a happy ending. She is now much happier and speaks with confidence in her work life, with her friends, and with her adoptive family. By her request, here is Julie’s story, in her own arrangement of words, of what it was like living with selective mutism.

“My experience growing up with Selective Mutism”

By: Julie

I had always been an anxious child. When I was a toddler my mum would take me to play groups and dance classes. But each time I would become crippled with anxiety, and she would take me back home. When I had to start school it was a different story – going home was not an option. This was when my SM symptoms became really obvious.

When I stepped outside the door to walk to school, I would get a knot in my stomach, and feelings of anxiety would rise up within me. At the same time, 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. I would walk to wherever I needed to go if I had to, find the nearest corner or seat, and then either stand or sit watching others talking all around.

As far as speaking, the nearest thing I can compare is like an anesthetic injection you get at the dentist where your face goes dead and the muscles won’t work. It was like having one of these injections in the part of my brain that controlled my speech function.

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, to get a drink, if I had forgotten my lunch money, or if I was hurt or bullied. I couldn’t participate in lessons, or play with others in the playground. Then as if by magic, as soon as I came out of school to walk home, the heaviness lifted, and I would come back to life, playing, talking, and doing everything normally.

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.

I can see how others would have seen this as stubbornness. 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 behavioral-emotional unit, and the didn’t know what was wrong either. Back then, selective mutism 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.

I don’t think any child would choose to be that stubborn for that long, especially if it forced them into this much social isolation; especially if it meant they could go hungry or thirsty, or couldn’t communicate all day… especially if it caused them to feel overlooked and invisible. Deep down, all children need recognition and want to fit in.

Teachers would try and encourage others 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. I saw others get recognised and rewarded for achievements, sung to on special occasions such as birthdays, invited to parties, but I couldn’t show anyone my personality or abilities because they were locked inside. People gave up inviting me places because I would just stand silent and make them feel awkward.

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 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.

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 now 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 :)