Hi, my name’s James, it’s July 2013 and I’m 23 years old.
This is the first time I’ve ever put my thoughts on selective mutism into words. I realise this won’t be the same for everyone; this is simply my own view of it. I’d like to share my story. I’m not sure of all the details, but this is how I remember it…
From the time I started nursery school, around the age of 4, I had suffered with Selective Mutism. At that age I was also diagnosed with a very mild form of Nager Syndrome, nothing extremely noticeable. But it means that I have narrow ear canals and therefore I also have hearing difficulties and have worn hearing aids since the start of school.
I suffered with SM until around the age of 19. It made school life difficult. Although I could talk freely at home, it was even difficult talking to family who I hadn’t seen for a while. I can remember how it felt to have other children making a big fuss if I did ever say a word or two. If I was told ‘well done’ or rewarded in any way it felt worse because it felt like they were saying: ‘there’s something very wrong with you, you are different, but you’ve managed to do something normal for once, good for you!’
I also remember having sessions with a speech therapist thoughout school life. I never really felt this was necessary, they obviously did though. I guess it could have been partly because of my hearing too. When I had sessions with the speech therapist I would be shown pictures with simple words underneath and was made to say the words, I found this quite degrading. There was also a kind of microphone-sound monitor device I had to speak into, it would light up as it measured the volume of my voice and I had to try and get it to a ‘normal’ level. I never told anyone how I felt about it, but I always remember thinking ‘I don’t need this, I know how to talk: I just need help overcoming my severe anxiety in doing so’….
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I recently read a report from a speech therapist dating back to primary school saying that ‘the only word I could say was the name of my dog.’ I don’t remember that, but I do know that having a dog at least took my mind off everything for a while, I could just be in the moment and have fun and also experience the love of an animal. I think one thing I realised is that humans could be very judgemental towards one another, whereas a dog, for example, doesn’t care what you look like or how you talk, whether you talk or not or anything like that, they just enjoy being with you. This is why I would say that the worst day of my life was the day I went along to the vets to have my dog put down, because he got very old and ill. I’ve had other bad days, but I can’t let anyone underestimate how important having the dog in my life was.
I remember a few comments from people such as ‘I think you’re doing it on purpose,’ and certain people getting very frustrated with me because I couldn’t say anything to them. It wasn’t that I didn’t want to deep down, but if felt like I physically couldn’t. I would just freeze up; I’d always feel bad afterwards too. I feel that the things that have kept me going in life from an early age has been my deep interest in spirituality, my pets and making short films.
I realise that once I had left school, all support had stopped. I didn’t know where to go or what to do. I managed to overcome SM, not with the help of a speech therapist or teachers or anyone else, but only through my hard work. This wasn’t easy….
Although I haven’t been officially diagnosed I am certain that I also have Asperger’s Syndrome. This possibly worked to my advantage in the end; I can get passionate and obsessive over certain things, so in my late teens, when I decided I needed to do something about my SM, I looked on the internet for any kind of self-help I could find and obsessively went about trying to overcome SM until finally I broke free from it. I managed to overcome it by forcing myself to ‘get out there’ and be around other people who had similar interests to me. I also looked online for self-hypnosis and subliminal audios, which I believe have really helped me. I am currently unemployed, although I did go to college to study photography, I’ve never been able to get work. I have had a few job interviews but have been unsuccessful in them to this date. I have never mentioned the SM or anything else to them, I’m not sure if I should? I am keen to start working and have been volunteering as an usher at a local theatre to keep myself busy.
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I should point out that I am still a very quiet, contemplative introvert. I still suffer with anxiety still feel a little bit anxious about talking. I also have OCD where I have to check things a few times before I’m satisfied they’re off or safe. The anxiety can be caused by various things, I don’t like constant loud noise with lots of people around, and I don’t like being in a lift and walking down the street – and various other things like this can make me anxious. A change of routine or something out of the ordinary can also make me anxious. I have always had a fear of doing things wrong and making mistakes because I fear criticism and/or being shouted at, and if I am shouted at I can take it very personally and not understand why that person may be fine with me just a short time later.
I don’t cope well with relationships either and enjoy spending time on my own. When my family say they love me, I can understand it on a rational level as in ‘I really care about you,’ but I don’t experience it as an emotion as others might do. I think the only time I’ve experienced what you might call ‘love’ is from animals. I still have trouble saying certain things to people, my communication skills are not the best, and I have found my words to be very direct and to the point. People say I need to elaborate more, but when I’ve been asked a question I give a direct answer. If you want something more, you would need to ask.
Anyway, SMIRA’s Facebook group has helped me get my own thoughts in order and write about my SM for the first time. I needed people to be caring and understanding, I was lucky to have that from my parents and immediate family, but I also had some people who weren’t. If I’m honest, I hold some resentment towards these people now. They did nothing to even try to help me, they were never there for me, they were not caring or understanding, they would complain about me without any understanding at all of what I was going through. There’s simply not enough awareness of selective mutism in society.
I’d now like to look into helping others in any way I can. If I could give anyone advice, it would be; show the person with SM that you care and that you are there for them. Don’t force them to speak, let them know that they are free to speak when they are ready. I wish I could offer more advice, but even I’m not sure what I could add to that. I’d like to know. I would like to thank the people who run SMIRA and contribute to it. I’m very interested in raising awareness, and thank you to anyone who took the time read all this. I woke up this morning with an urge to write something, and then when I started writing more and more words and thoughts came out. I have been keeping up to date with everything since I discovered SMIRA’s Facebook group. Keep up the good work!
© James Redrup & SMIRA 2013
Shortly after writing this article James sadly passed away after a very short illness. This piece is reproduced with permission of James’ mother, who has added the following comments:
It means a lot to me that my boy’s ‘voice’ will be heard again. I’m so very proud of my boy. He did so much to overcome his SM without any help from outside agencies. They never diagnosed him and put it down to his hearing difficulties. I never really bought into that but I knew nothing of SM then. He was a very brave, gentle and wise soul, a real shining light to us all. I know he writes that he didn’t really feel the love, and I guess he possibly was mildly Aspergers, but he was loved and cherished without measure. I hope his words are of some help to others. – Donna Redrup