My experience: Growing up with Selective Mutism
Selective mutism is a severe anxiety disorder that affects both children and adults. It is believed that one in 150* children are affected and it is more common in girls that in boys. In this specially commissioned blog, Carl Sutton from iSpeak discusses growing up with this misunderstood disorder.
From the age of 14 until I was 23, I was unable to speak at home. I could speak outside of it, with select friends at school, college and later university. But not at home. This was not ordinary teenage reticence. Regardless of the distress it caused me, the humiliating situations I found myself in, or the punishment I received, there was absolutely no way that I could speak, even when I desperately wanted to. I was suffering from an uncommon pattern of selective mutism.
Selective mutism is a situational anxiety disorder, which can be likened to a phobia of speech. It almost always develops in early childhood – as it did for me. And for me it became much worse at around 14 years old. However having met an older adult with selective mutism I can state that it can potentially be lifelong.
While selective mutism may seem like something people choose to do (the old name for this condition used to be aphasia voluntaria) this is absolutely not the case. Muteness is triggered by the proximity of given specific individuals or groups of people. It becomes instinctive. Triggers may be generalized: other students, teachers, shopkeepers, or even work colleagues. Or triggers may be much more specific: your aunt, uncle, siblings or parents. Most people with selective mutism have a mixture of generalized and specific triggers. During the worst of my own selective mutism, my primary triggers were my stepfather, mother, stepsister, stepbrother, sister-in-law and so on. As this started in early childhood, none of my grandparents ever heard my voice. They died long before I was able to speak freely.
Selective mustism is far from the innocuous condition that it may seem. As a young adult, I found it to be extraordinarily difficult to escape and, frankly, torturous. Given it was my instinct to be mute with key people, I also had fixed emotional rules around speech. My rules were: a) everyone who I had never spoken to could never be spoken to; b) everyone associated with everyone I couldn’t speak to couldn’t be spoken to either; c) those who did not know I was mute in one situation could not find out about my muteness in another; and d) those who only knew me as mute could never discover I could speak. I didn’t consciously decide these rules, but they controlled my life.
Given such rules children and adults with selective mutism tend to live double lives, hiding their ability to speak in certain situations, and desperately trying to conceal their mutism in others. Parents are often extremely surprised when they learn their voluble child at home cannot speak at school. In my own case I kept my muteness at home an absolute secret from my friends.
In the early teenage years, selective mutism is very often compounded by social anxiety disorder. By young adulthood, or earlier, many people with selective mutism will also experience depression and other anxiety disorders, including agoraphobia. Because of this selective mutism is ideally tackled in childhood – when it most readily treatable - to avert further, potentially lifelong, mental health issues.
Imagine dealing with an anxiety so powerful it doesn’t allow you to talk, and constantly being told you are rude. Not only do people with selective mutism suffer due to a condition they have not asked for - something that is happening to them which is entirely beyond their control - they are also often judged harshly as being difficult, uncooperative, rude, dumb, stand-offish, or even stuck up! Children and adults with selective mutism deserve compassion and understanding rather than judgement. Too often they are wrongly judged as choosing not to speak when in fact they simply can’t.
The following books may also be helpful:
Tackling Selective Mutism
Editors: Alice Sluckin & Benita Rae Smith
Jessica Kingsley Publishers (28 Sept 2014)
Selective Mutism: In our own words
Editors: Carl Sutton & Cheryl Forrester
Jessica Kingsley Publishers (21 March 2016)
The Selective Mutism Resource Manual (second edition)
Maggie Johnson & Alison Wintgens
Speechmark Publishing Ltd (November 2015)
For more information on selective mutism go to http://www.ispeak.org.uk and http://www.smira.org.uk
* Ref: NHS Choices website on Selective Mutism