A question that many can’t answer, or can’t answer accurately, is: What is selective mutism? I am unsure myself the best way to answer this, little research has been done into SM and some research seems incorrect to me, a person with first hand experience of the condition. I do understand that the name of the disorder is very misleading and most of the research and information available suggests that SM is something far simpler than it is. SM is often described as a severe social anxiety disorder, as well as a childhood condition. I don’t agree, quite simply. SM is also often explained as, a child or young person who is capable of speech who shows persistent failure to do so in specific situations, such as school. I only partly agree with this . Although I have many disagreements with current research and information, I myself am still not entirely sure what SM is, I think there is a huge amount yet to be learned.
I see SM as a condition which is on a spectrum, it affects people of different ages, at different points in their lives in different ways, in different patterns. I know a huge number of those with SM who are NOT stereotypical and do not have straight forward textbook symptoms, such as ability to talk freely at home but inability to talk in school. If only it were that simple! SM to me appears to be a communication spectrum condition, different aspects of communication are affected on different levels of severity. Some of us with SM only have difficulty talking, some of us have difficulty with eye contact, whispering, singing, signing, smiling, crying, laughing, clapping, waving, pointing, using gestures, yawning, walking, moving, dancing, hopping, jumping, writing, playing a musical instrument, playing sports, drawing, painting, arts and crafts, wearing make-up, choosing clothes and outfits, being expressive, choosing books in the library, choosing food in the dinner hall, choosing resources, choosing who to work with, choosing which music to listen to, having a choice more broadly. Eating, drinking, making a noise; coughing, sneezing, choking, walking with squeaky shoes and so on.
Communication is huge, our behaviour, our actions, our movements, our choices, our mannerisms are all communication, they’re expressing and communicating to others who we are. Selective mutism is rarely, or so it seems, something that only affects a persons ability to verbally communicate. This common misunderstanding leads to much unfair treatment, unfair reactions and unwanted unkind comments from professions, friends, family and others around us. Many of us with SM have heard this similar phrase; “I know you can’t speak, but that doesn’t mean you can’t use hand gestures or point!”. Due to the misconception that only our voices are taken from us (situational), we are faced with a lot of angry, frustrated and upset people.
Selective mutism is often thought of as a childhood condition, which begins when a child starts nursery or school and it is often associated with separation anxiety. Though this is often the case, it is also often not the case. I myself had been perfectly fine at nursery, at pre-school, in reception class, year 1 and the first half of year 2. I lost my voice at age 7.5 years, at a school I had previously been able to speak and communicate freely in, triggered by change/ loss of friends. It is not uncommon that SM is triggered after the age of 5, I personally know of a good handful of cases of it developing in teenage years. Many professionals wrongly believe SM is only evident in childhood, this is simply not true. Selective mutism does not just magically disappear, it is not something you can grow out of, it is a condition that is treatable and can be overcome with the correct understanding, support, determination, strength, time, patience and environment. What helps one person with SM does not necessarily help the next. I know of a few people with SM who have thrived on receiving praise for their social and communication progression, where as most of us cannot cope with receiving praise, or attention, for/ on our communication. Another example, some of us have absolutely no problem giving or receiving eye contact when in a social situation, others deeply struggle, others find it causes them to regress as it heightens anxiety. It is important that those working with us do not assume we are a typical textbook SM case.
It is also believed that those with SM are naturally anxious and anxiety is the cause of SM. I do strongly think this needs researched further. I was not an anxious child, not generally nor socially. I felt anxious when I found I couldn’t speak that first day back in January 2003. I was terribly confused and frightened, I was not frightened of talking. I was not frightened of saying something wrong, I was not scared of people hearing my voice, I JUST could not speak. This was the case for me for the first 3 years of having SM. I developed the phobia of speaking and communicating when I was about 10 years old, when I had experienced bullying and had a broader understanding and more of a care about how others perceived me. I then had the phobia of both speaking and not speaking. “I’m scared I’m not going to be able to talk” later became, “I’m scared I’m not going to be able to talk and I’m scared of talking.”. From the age of 7 to 10, I was NOT scared of speaking, I repeatedly tried to speak day in day out, I’d open my mouth, I’d raise my hand in class to say something, but no sound would come out. After I’d received nasty comments at age 10, I then became afraid of the words I might say, the evidence I might show about who I am/ was, I thought who I was could increase reason for me to be bullied, who I was was a 10 year old girl not interested in popularity or trends. I was scared of talking because talking would show people so much about myself; my accent, my tone of voice, my opinions, the pitch of my voice, my interests, my strengths, my weaknesses, the words I couldn’t properly pronounce, the things I didn’t understand, the questions I had about life, the misunderstandings I had, my mannerisms and who I was. I was also afraid that my voice and my words would cause negative emotions in others, I was afraid of upsetting others. I was most afraid of the shock, the unwanted attention I’d likely receive if I spoke after not being able to do so for a few years.
However, I never gave up trying, I was still equally afraid of NOT being able to talk, because that too also showed who I was and more importantly it showed who I wasn’t. It lead to misunderstandings and misinterpretations. I was afraid of NOT talking because people could easily assume I was rude, ignorant, disinterested, unable to physically speak at all (anywhere/ with anyone), people wondered if I could speak English or if I understood English, people wondered if I had a low IQ and assumed I didn’t understand other’s questions, their words, social cues and social life. People would think they’d upset me and thought I didn’t want to talk to them, they’d think I hated them, they’d think I thought I was too good to involve myself with them. I was scared of what having no voice brought, the inability to: have a say, explain myself, defend myself, have choice, ask for help, let others know I needed assistance and so much more. Up until the age of 10 I was only afraid of all of this, all of what NOT being able to talk brought, I had no worry about speaking, I just couldn’t and I cannot express this enough.
SM affected most, or all, aspects of communication for me, more of communication was affected the longer I went without support. At age 7 until 10 I had difficulty speaking, singing and crying. From age 10 – 12 I still had the same difficulties plus, eye contact, being expressive through choice of clothes, hair style, accessories and music. From age 13 – 19 I had difficulty with all the previously mentioned plus; eating in front of others, drinking, walking, painting, writing, drawing, yawning, coughing, sneezing, moving, raising my hand, using gestures, waving, laughing, scratching where I had an itch, taking my jumper off if I was hot, knocking on doors, ringing doorbells, listening to music, running, joining in with sports, using cue cards/ picture communication cards, change in appearance at all (wearing an apron in food tech, tying my hair up in PE, wearing safety goggles in science), and anything that communicated that I was me, that I understood, that I could hear, or showed what I was good at, what I wasn’t good at, what my individual needs were, what I liked, what I disliked and everything in-between.
In situations where we with SM are able to communicate, often such as in our comfort zone, our home, I feel we still face similar struggles; many of us struggle with some of the following; congratulating people, giving hugs and kisses, using manors; saying please, thank you or sorry, saying hello or goodbye, saying people’s names (Mum, Dad, Person A), swearing, using slang, using expressive tone of voice, shouting, screaming, speaking to those our own age, holding a conversation, speaking to those of opposite gender, or the opposite; comfortable taking to the opposite gender but not the same gender, having our photo taken, smiling at the camera, looking at the camera, smiling with our mouths open, needing structure, needing to know what to expect, a need to be prepared to lower anxiety. We often feel the need to turn our TV, music or anything audible on low volume so others don’t hear. Many of us find asking for things difficult, such as what we want for our birthday, or what we need from the supermarket, we may find birthdays and Christmas challenging, the inability or strong dislike of opening cards and presents in front of others, or blowing out our birthday candles, or have others sing to us, the direct attention is too much to cope with. In situations where we are able to communicate, many of us find it extremely difficult to attract the attention of others and find ourselves in many awkward situations. These are all things we have to overcome, things we actually need support with too, as well as needing support when we cannot communicate at all, or very little. SM often affects us everywhere.
Selective Mutism for me means heightened areas; strengthened listening skills, eye for detail, perfectionism, being very observant, sensitivity, creativity, a grasp of understanding of difference and diversity, a love for simplicity. Selective Mutism for me does not mean a person who is naturally quiet, introverted and/ or anxious. A person with SM to me may be introverted, ambiverted or extroverted, they may be extremely expressive in some areas of communication, but not in others, they may be a lover of being center of attention when in situations they are not controlled by their SM. Selective Mutism to me is varied, but we all hold similarities and share certain characteristics and similar personality traits and strengths. Selective mutism to me is not something that only affects children. To me, selective mutism affects children, young people and adults, of all genders, different backgrounds, in different settings, not just in school/ education. SM is not somethings it’s name suggests. It is not something we choose, it is not a choice, it is not “selective” mutism, nor is it simply “mutism” , it covers communication. As I have mentioned before; I prefer to refer to the condition as: situational communication disorder/ condition. To me, selective mutism, or situational communication condition is both physical and psychological.
What is selective mutism to you?
What is selective mutism?