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sasha_feather) wrote2019-10-19 03:40 pm
sasha_feather) wrote2019-10-19 03:40 pm
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Repost: old Selective Mutism article from FWD
Thank you to runpunkrun for finding this article for me! I thought it was lost for good so now I'm going to post it several places.
Selective Mutism
3 September, 2010guest post
“To choke”, used as a metaphor in performance, means to freeze up, to fail to perform, to be overcome with stage fright or other emotions and simply stop moving. To become “choked up” with emotion, a phrase familiar to many of us, means to feel emotion so strongly that it is difficult to speak. It is a feeling of the throat tightening and words stopping.
These are natural, normal phenomena that most people feel once in a while.
I have Selective mutism (link goes to Wikipedia) which I classify as a disability and also believe to be a natural and normal phenomenon, albeit a rare one, affecting an estimated 7 in 1,000 people. I am currently seeking treatment for it which has me thinking about selective mutism more than I usually do, and its impact upon my life.
Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak. It is not a reflection upon the child’s parents; it is a disability. The child would like to speak but cannot, in certain environments, to specific people, or about certain topics, due to extreme anxiety. This disorder can extend into adulthood, which is the case with me. I was never formally diagnosed or treated as a child.
There are specific instances from childhood and adolescence that stand out in my memory, and others that my family still talk about, that are good examples of selective mutism in my life:
I did not speak to my preschool teacher the entire year (but talked freely at home)
I did not talk to store clerks
I went to junior prom and did not talk to anyone due to anxiety
I did not talk much in church/Sunday school and did not make friends there; although I made friends freely in other venues
What I have trouble talking about now: Basically anything that is associated with a lot of emotion. Here are some examples:
Sexuality, being queer
My chronic pain and illness
Conflict with friends or family
I have trouble calling people I don’t know or knocking on doors, although I don’t think this is uncommon for shy people
I am sometimes uncomfortable being asked to keep secrets or not to talk about things because it reinforces this anxiety
One article I read recently said: “You can’t get a kid verbal until you have social comfort” (http://www.selectivemutism.org/news/people-magazine-spotlights-dr-elisa-shipon-blum-director-emeritus). This resonated quite strongly for me, because as a queer person in society, who was closeted (to myself) for a very long time, it is rare that I am socially comfortable. I have certainly learned many coping techniques. But it is hard to speak when you are not comfortable with yourself, and when society makes you feel unsafe. I cannot talk about selective mutism without talking about my experience of being queer, and being closeted. They are tied together. Activist Mia Mingus says, “intersectionality is a big fancy word for our lives.”
What does selective mutism feel like? People talk about a flight or fight response to danger. This is a third response, a “freeze” response. The body senses danger, although the source is unclear, and the body freezes. Talking is impossible. Even thinking becomes different, slowed, unclear. “How can I get myself out of this situation?” is usually what my brain is focusing on, but often that thought is in conflict with some other need or desire like wanting to be at a party or needing to answer a question directed at me. It is a terrible feeling, a deer-in-headlights feeling. I want to escape, but I can’t figure out how, I can’t figure out what is even going on. As I have learned more and more about this I have learned to simply feel the anxiety, feel it in my body and my throat, and not try to think so hard, try not to focus on words, which often do not work well for me in times of high anxiety.
What helps? Getting away from words and looking at images helps. Doing things that root me in my body helps, such as holding my hands under hot water. Writing out whatever is bothering me helps tremendously. And, importantly, I need to notice when it is happening. I have had this all my life; it’s my normal, after all, so I don’t always notice when I’m being anxiously quiet or peacefully quiet. I don’t always notice if there is something important in my life that I am not talking about. I don’t think this is just a selective mute thing: in a repressive culture, there are plenty of important things we just don’t talk about, for all sorts of reasons. This might be because to speak about them makes the thing more real; to speak might make other people uncomfortable or angry or bored; to speak might make myself vulnerable, because someone could use my words against me. Speaking is dangerous, and silence is a naturally protective stance. The body knows this, the throat closes.
Thankfully, the fingers don’t, the fingers can still type. Writing about my life is practice for talking about my life. It is worlds easier.
Speaking is a political and personal act. I want to get better at it, I want to value my own voice and what I have to say. I am taking baby steps in this direction. I am, strangely enough, good at public speaking as long as I don’t have to talk about myself, or something too personally connected to myself. I do better at speaking when my role is defined, such as in academic or club environments. I have read interviews of actors and other performers saying similar things, that the stage or screen is the only place they are comfortable speaking, because they are playing someone else, not themselves.
In all the reading I have done about selective mutism, on blogs, in scientific articles, on awareness websites, all the focus is on diagnosis, treatment, therapy. Don’t get me wrong, I think these things are great. But what I don’t understand is the lack of discussion on how to live well with the disorder. The social justice model of disability has taught me many things, and one of those things is that I don’t necessarily need to be cured. I can seek accommodation for my disabilities and live well with them. Why not teach kids with SM sign language? Why not let them type or write their responses to questions? Why do we privilege speech so highly? Other forms of communication are just as useful, and sometimes better. There are many forms of self expression. Words are just one kind, and speech is just one iteration.
About Sasha Feather
Sasha likes science fiction and fantasy, horses, and coats. View all posts by Sasha Feather →
20 thoughts on “Selective Mutism”
Sophie
3 September, 2010 at 11:35 pm
Oh wow. I didn’t know there was a word for that experience, or that it was so common. Mine isn’t anywhere near as bad, I don’t think I’d classify it as a disability (at least not now as an adult, it was sometimes debilitating as a child/teenager) but…yeah. One of the more unpleasant moments of my life was the first time I tried to break up with my abusive ex boyfriend (though that’s not how I was thinking of it at the time) and I ended up curled in the foetal positon at a bus station unable to move or speak for half an hour. FUNTIMES.
Anyway, thankyou very much for making this post.
xw
4 September, 2010 at 12:55 am
I do better at speaking when my role is defined, such as in academic or club environments.
Oh, absolutely! What other people consider “simple” questions cause me no end of anxiety — “Do you like that book?” “What are you doing this weekend?” — because there’s usually no framework and it’s far too perplexing (and time-consuming) to try to sort out my relationship with this person (acquaintance? coworker? classmate?) to figure out what the appropriate response is. [I’m not sure if this is similar to your situation or process, but it feels related…]
I have never spoken very much (because I’m either disinclined to or simply CAN’T) and I’m very grateful to hear this discussed as an actual physical or biological phenomenon rather than a character flaw. …If possible, when I freeze like that, I typically pretend not to have heard, but that doesn’t always help.
Tariq Smith
4 September, 2010 at 2:59 am
Thank you for writing this. I think that you are right. There needs to be more awareness and use of other forms of, and other combinations of, communication styles –
Dor example your idea of signing is really good and I think something that should be encouraged more often for people who are have selective mutism, or are shy, or stutter, or to for an hearing/speaking person to communicate with someone who signs…. there are so many times it would be useful. Also perhaps typing into a device and it speaks for when communicating with someone that doesn’t use sight or or produces braile for when communicating with someone who doesn’t use sound or sight for communication. There are so many other combinations of communication and sound/sight are privilaged so much. It’s so limited.
Thanks again.
Whirlwitch
4 September, 2010 at 10:24 am
I read a lot of Torey Hayden books way back when. Many of the kids featured had elective mutism. I was wondering as I read whether they could be the same thing, and a quick Google just confirmed it. The name used to be elective mutism because the assumption was that the kids were choosing not to talk, since they were physically capable of it. So I am thinking about the gap between this rationale, and the reality. As well as the mindset that is a person does not do a thing they seem to be physically capable of doing, that they are simply choosing not to do it.
Jesse the K
4 September, 2010 at 12:14 pm
Very illuminating! I’m glad you can communicate this experience, through whatever mode. Text-based conversation, like here, is very powerful for many disabled people.
Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak.
I was distressed to learn this condition was previously called elective mutism, as if the person with SM was “just stubborn.” That disabling metaphor serves the kyriarchy: it not only blames the victim, it defines the victim as having agency when we don’t. Fundamentally, it reduces our lives to how well we can serve the kyriarchs. Will she speak when spoken to? Good. “Refuses” to answer? Bad.
Astrid
4 September, 2010 at 12:51 pm
Thanks so much fo rthis post. I can relate so much and especially could as a teenager. I borrowed thephrase “locked up inside” from a selective mutism E-mail support group I was part of briefly in 2003. (I I don’t have a diagnosis of selective mutism; mine is probably due to my autism-relatex anxiety.)
erda
4 September, 2010 at 1:04 pm
But what I don’t understand is the lack of discussion on how to live well with the disorder.
So true. There are all sorts of anxiety disorders that will never completely vanish no matter what the treatment.
Static Nonsense
4 September, 2010 at 2:47 pm
In situations where I can’t speak, I’ve usually managed with American Sign Language, text/writing, or using my DS. It helps a lot when I need to communicate to loved ones, but most store clerks don’t understand me and think I’m just being rude. It’s really frustrating.
And I definitely agree with the teaching children with SM sign language – if I had the chance to learn it when I was younger, it would have made communication so much easier for me even now. I can only imagine how many more people it would be helpful for.
tariq Smith I agree, it would be awesome to see more creativity regarding communication.
Sharon Wachsler
4 September, 2010 at 3:33 pm
Thank you so much for this informative post. I hadn’t heard of this before.
In 2007, due to neurological damage from tick-borne disease, along with the loss of several other forms of function, I suddenly lost the ability to speak, *most of the time.* My voice would be gone upon waking up, and usually during the course of the day, it would slowly, croakily return. Sometimes, however, I could speak totally clearly in French or German or in song (though not when it was at its worst) and I could also produce unintentional sound (spontaneous laughter, crying out in pain), when I couldn’t speak.
This led almost everyone in my life, including many doctors, to believe that it was psychological. Some people felt I was doing it to be manipulative. Since I love talking, words, speech, etc., and suddenly lost control of many aspects of my life by being unable to speak, the whole combination was torturous. Even the SLP I saw was clueless, although he did *not* give me the “it’s all in your mind” line. I wonder now if any of them had heard about selective mutism (without really understanding it) and thought that was what was going on.
Cee
4 September, 2010 at 4:32 pm
Wow, thank you for posting this. I never knew what to call it or if anyone else experienced this.
kaninchenzero
4 September, 2010 at 4:58 pm
holy fuck my life thank you thank you thank you
Sasha Feather
4 September, 2010 at 7:53 pm
Thank you for all your wonderful and moving comments. It is true that this disorder used to be called “elective mutism” and was thought to be a willful choice not to speak. Some people still see it as a character flaw, which is plain ableism and very frustrating to deal with. I would venture to say that most people with anxiety disorders want to get along and please other people, not cause more social distress. If we could talk more to make others happy, we would.
Thanks for the mention of the Hayden books, Whirlwitch; I haven’t heard of those. Most books I have read that feature mutism in a character are instances where it follows a traumatic event: Speak by Laurie Halsie Andersen and The House of the Scorpion by Nancy Farmer are two such examples. These are both very good books and I recommend them, but I want to note that they are not consistent with my experience. I do not have trauma in my background. I believe I was born with this disorder.
Lauren
4 September, 2010 at 10:39 pm
I enjoyed reading this article, thank you for posting this and helping to spread awareness of this condition. I was diagnosed with Selective Mutism when I was in preschool. I was born 3 months premature and I theorize that the trauma of those first 3 months manifested itself as the selective mutism. I shared many of the same symptoms that you describe, most notably talking at home but not to anyone at school. I was treated with play therapy by a local psychologist, and I suppose it worked, though I can’t remember anymore. My “shyness” gradually got better over my formative years.
I don’t think I was “cured” though – there are still some situations where I experience the same sensation of being “unable* to speak – or, if I am able to, things come out very hesitant and garbled. And then there are many situations where I act very “normal” and can speak freely and accurately.
I’ve always been much more comfortable with – and better at – written communication than verbal communication.
I also often feel uncomfortable socially, as a geek woman. I agree that not always feeling comfortable in general contributes to episodes of muteness.
bluehook
5 September, 2010 at 5:27 pm
Some of what you say runs parrallel to my own experience. Although not to the same extent, I have difficulty initiating conversation and answering questions that require personal emotional opinion, yet have no problem at all in public speaking and can function much better in a group when I have a set role or part to play. I see this as all being a function of my Asperger’s Syndrome, along with social anxiety. Is it possible you have undiagnosed Asperger’s or another Autism Spectrum condition? Not that that would effect a ‘cure’ but might explain the origin of the difficulty.
permockable
5 September, 2010 at 8:02 pm
Thanks for writing this. Yesterday, I started writing up a thing about my experience with SM, but apparently that’s triggery for me, and it ended in a panic attack and deletion. So I’ll just say that it was seriously bad when I was a kid, and it’s something I still struggle with (I was 22, I think, when I had to communicate with my BFF and my now-husband via a notepad for something like 36 hours).
Also: I had no idea there was a term for this until you mentioned it a while back, and I had a major YANA moment — similar to the first time other people mentioned that they had phone phobias too — “really it’s not just me what.” So, yeah, thank you.
Sasha Feather
6 September, 2010 at 2:35 am
lauren, I identify as a geek woman too! Nice to meet other people who have selective mutism.
bluehook, I absolutely think there are similarities between selective mutism and some aspects of autism spectrum/Asperger’s disorder; with difficulty speaking being the chief similarity. I’m not a physician and can’t really say what is and is not each diagnosis, although I am not on the autism spectrum, and I’m quite sure these are distinct disorders. I’m sure there are people who have both diagnoses. I also think those of us who have trouble with speech, no matter what our diagnosis or label, can absolutely learn from each other.
permockable, I am so sorry about your panic attack! You are definitely not alone.
Kaz
7 September, 2010 at 1:04 pm
Thank you for writing this post! It was very informative and interesting to read. 🙂
I stutter, and although I think that’s a very different speech disorder (I get a not-being-able-to-speak feeling but on specific sounds and words while I’m talking rather than any sort of general topic, and I can still force them out resulting in blocks) there were things I could really, really identify with in this post. In particular, your last paragraph had me mentally jumping up and down going “yes! Yes! Yes!” Dialogue around stuttering esp. in the medical realm also focuses pretty much solely on speech therapy, with *maybe* a little bit of stuttering acceptance thrown in but even that’s often focused on “if you feel less anxious about stuttering you’ll stutter less!” Which is ridiculous given the low success rate of stuttering speech therapy. Living with it – I’ve turned up a few blogs that talk about it, but in the speech therapy/professional realm it’s pretty disastrous. And alternative methods are essentially never, ever talked about. Any kind of typing-to-audio device, sign language, writing in place of speaking – only place I’ve seen these discussed is on disability rights blogs, and hardly any PWS (people who stutter) identify as disabled.
I am also sadly unsurprised to hear it used to be assumed people with selective mutism were doing it on purpose (and really hope that attitude’s not so widespread any longer). Again, similar things happening with stuttering – which is also variable, and where PWS are usually totally fluent in specific situations.
Also, re: autism discussion – I do sometimes experience a difficulty translating thoughts to words which I blame on autism, but I’m not sure how related that is. For instance, I think it actually causes more difficulty for me in typing than in speech – when I’m talking I can sort of shove the idea of what I want to say at my vocal cords and have something that’s at least closely related to it come out, whereas I’ll have months where I feel as if I’m barely able to communicate in text at all. Then again, I have no idea how typical this is for autistic people either.
Sharon Wachsler
7 September, 2010 at 6:37 pm
kaz – Yeah, when I developed apraxia, I already knew some ASL and became pretty conversant in it out of necessity. When I went to see the SLP, I said (through an interpreter), “I’m very lucky that I already knew sign so I can still communicate with some of the people in my life.”
And he was like, “Not everyone signs, though. Don’t you want to be able to speak?”
Which I felt like was 1. Missing the point entirely (that I was grateful I had some means of communication, having suddenly become unable to voice), 2. Audist/oppressive attitude toward Deaf people, and 3. Obnoxious, because of course I wanted to be able to speak or why would I have been there?
So, with you on the bad attitude toward alternative modes of communication. The only doctor I saw of the dozens in that period who got that it was a blessing I knew how to communicate nonverbally was my PCP. Everyone else was completely freaked out, clueless, or even hostile to it.
Cassandra
9 September, 2010 at 9:43 am
Thank you for this post. I never knew there was a name for this specifically. I’ve always had trouble talking to people and have been chastised for what people see as me being stubborn and difficult. I wont ask sales people at stores questions even when I really need to and I have an incredibly hard time talking on the phone. I write out what I’m going to say before hand a lot of the time. I went through almost all of middle school without speaking. A couple of years ago I stopped communicating with almost everyone completely for months. The only people I had contact with were my parents and even that was limited. It was hard to recover from that because I’d felt like I had lost the ability to carry on any normal conversations. The internet has actually helped me a great deal. I joined some online forms and started posting as a way to dip my toes back in the water.
Sasha Feather
12 September, 2010 at 4:15 am
Thanks for your comments everyone!
cassandra, that sounds like a very hard experience. The internet has helped me a lot too, in being able to form friendships and feel connected to people, and to practice communicating. Yay internet!
runpunkrun for finding this article for me! I thought it was lost for good so now I'm going to post it several places. Selective Mutism
3 September, 2010guest post
“To choke”, used as a metaphor in performance, means to freeze up, to fail to perform, to be overcome with stage fright or other emotions and simply stop moving. To become “choked up” with emotion, a phrase familiar to many of us, means to feel emotion so strongly that it is difficult to speak. It is a feeling of the throat tightening and words stopping.
These are natural, normal phenomena that most people feel once in a while.
I have Selective mutism (link goes to Wikipedia) which I classify as a disability and also believe to be a natural and normal phenomenon, albeit a rare one, affecting an estimated 7 in 1,000 people. I am currently seeking treatment for it which has me thinking about selective mutism more than I usually do, and its impact upon my life.
Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak. It is not a reflection upon the child’s parents; it is a disability. The child would like to speak but cannot, in certain environments, to specific people, or about certain topics, due to extreme anxiety. This disorder can extend into adulthood, which is the case with me. I was never formally diagnosed or treated as a child.
There are specific instances from childhood and adolescence that stand out in my memory, and others that my family still talk about, that are good examples of selective mutism in my life:
I did not speak to my preschool teacher the entire year (but talked freely at home)
I did not talk to store clerks
I went to junior prom and did not talk to anyone due to anxiety
I did not talk much in church/Sunday school and did not make friends there; although I made friends freely in other venues
What I have trouble talking about now: Basically anything that is associated with a lot of emotion. Here are some examples:
Sexuality, being queer
My chronic pain and illness
Conflict with friends or family
I have trouble calling people I don’t know or knocking on doors, although I don’t think this is uncommon for shy people
I am sometimes uncomfortable being asked to keep secrets or not to talk about things because it reinforces this anxiety
One article I read recently said: “You can’t get a kid verbal until you have social comfort” (http://www.selectivemutism.org/news/people-magazine-spotlights-dr-elisa-shipon-blum-director-emeritus). This resonated quite strongly for me, because as a queer person in society, who was closeted (to myself) for a very long time, it is rare that I am socially comfortable. I have certainly learned many coping techniques. But it is hard to speak when you are not comfortable with yourself, and when society makes you feel unsafe. I cannot talk about selective mutism without talking about my experience of being queer, and being closeted. They are tied together. Activist Mia Mingus says, “intersectionality is a big fancy word for our lives.”
What does selective mutism feel like? People talk about a flight or fight response to danger. This is a third response, a “freeze” response. The body senses danger, although the source is unclear, and the body freezes. Talking is impossible. Even thinking becomes different, slowed, unclear. “How can I get myself out of this situation?” is usually what my brain is focusing on, but often that thought is in conflict with some other need or desire like wanting to be at a party or needing to answer a question directed at me. It is a terrible feeling, a deer-in-headlights feeling. I want to escape, but I can’t figure out how, I can’t figure out what is even going on. As I have learned more and more about this I have learned to simply feel the anxiety, feel it in my body and my throat, and not try to think so hard, try not to focus on words, which often do not work well for me in times of high anxiety.
What helps? Getting away from words and looking at images helps. Doing things that root me in my body helps, such as holding my hands under hot water. Writing out whatever is bothering me helps tremendously. And, importantly, I need to notice when it is happening. I have had this all my life; it’s my normal, after all, so I don’t always notice when I’m being anxiously quiet or peacefully quiet. I don’t always notice if there is something important in my life that I am not talking about. I don’t think this is just a selective mute thing: in a repressive culture, there are plenty of important things we just don’t talk about, for all sorts of reasons. This might be because to speak about them makes the thing more real; to speak might make other people uncomfortable or angry or bored; to speak might make myself vulnerable, because someone could use my words against me. Speaking is dangerous, and silence is a naturally protective stance. The body knows this, the throat closes.
Thankfully, the fingers don’t, the fingers can still type. Writing about my life is practice for talking about my life. It is worlds easier.
Speaking is a political and personal act. I want to get better at it, I want to value my own voice and what I have to say. I am taking baby steps in this direction. I am, strangely enough, good at public speaking as long as I don’t have to talk about myself, or something too personally connected to myself. I do better at speaking when my role is defined, such as in academic or club environments. I have read interviews of actors and other performers saying similar things, that the stage or screen is the only place they are comfortable speaking, because they are playing someone else, not themselves.
In all the reading I have done about selective mutism, on blogs, in scientific articles, on awareness websites, all the focus is on diagnosis, treatment, therapy. Don’t get me wrong, I think these things are great. But what I don’t understand is the lack of discussion on how to live well with the disorder. The social justice model of disability has taught me many things, and one of those things is that I don’t necessarily need to be cured. I can seek accommodation for my disabilities and live well with them. Why not teach kids with SM sign language? Why not let them type or write their responses to questions? Why do we privilege speech so highly? Other forms of communication are just as useful, and sometimes better. There are many forms of self expression. Words are just one kind, and speech is just one iteration.
About Sasha Feather
Sasha likes science fiction and fantasy, horses, and coats. View all posts by Sasha Feather →
20 thoughts on “Selective Mutism”
Sophie
3 September, 2010 at 11:35 pm
Oh wow. I didn’t know there was a word for that experience, or that it was so common. Mine isn’t anywhere near as bad, I don’t think I’d classify it as a disability (at least not now as an adult, it was sometimes debilitating as a child/teenager) but…yeah. One of the more unpleasant moments of my life was the first time I tried to break up with my abusive ex boyfriend (though that’s not how I was thinking of it at the time) and I ended up curled in the foetal positon at a bus station unable to move or speak for half an hour. FUNTIMES.
Anyway, thankyou very much for making this post.
xw
4 September, 2010 at 12:55 am
I do better at speaking when my role is defined, such as in academic or club environments.
Oh, absolutely! What other people consider “simple” questions cause me no end of anxiety — “Do you like that book?” “What are you doing this weekend?” — because there’s usually no framework and it’s far too perplexing (and time-consuming) to try to sort out my relationship with this person (acquaintance? coworker? classmate?) to figure out what the appropriate response is. [I’m not sure if this is similar to your situation or process, but it feels related…]
I have never spoken very much (because I’m either disinclined to or simply CAN’T) and I’m very grateful to hear this discussed as an actual physical or biological phenomenon rather than a character flaw. …If possible, when I freeze like that, I typically pretend not to have heard, but that doesn’t always help.
Tariq Smith
4 September, 2010 at 2:59 am
Thank you for writing this. I think that you are right. There needs to be more awareness and use of other forms of, and other combinations of, communication styles –
Dor example your idea of signing is really good and I think something that should be encouraged more often for people who are have selective mutism, or are shy, or stutter, or to for an hearing/speaking person to communicate with someone who signs…. there are so many times it would be useful. Also perhaps typing into a device and it speaks for when communicating with someone that doesn’t use sight or or produces braile for when communicating with someone who doesn’t use sound or sight for communication. There are so many other combinations of communication and sound/sight are privilaged so much. It’s so limited.
Thanks again.
Whirlwitch
4 September, 2010 at 10:24 am
I read a lot of Torey Hayden books way back when. Many of the kids featured had elective mutism. I was wondering as I read whether they could be the same thing, and a quick Google just confirmed it. The name used to be elective mutism because the assumption was that the kids were choosing not to talk, since they were physically capable of it. So I am thinking about the gap between this rationale, and the reality. As well as the mindset that is a person does not do a thing they seem to be physically capable of doing, that they are simply choosing not to do it.
Jesse the K
4 September, 2010 at 12:14 pm
Very illuminating! I’m glad you can communicate this experience, through whatever mode. Text-based conversation, like here, is very powerful for many disabled people.
Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak.
I was distressed to learn this condition was previously called elective mutism, as if the person with SM was “just stubborn.” That disabling metaphor serves the kyriarchy: it not only blames the victim, it defines the victim as having agency when we don’t. Fundamentally, it reduces our lives to how well we can serve the kyriarchs. Will she speak when spoken to? Good. “Refuses” to answer? Bad.
Astrid
4 September, 2010 at 12:51 pm
Thanks so much fo rthis post. I can relate so much and especially could as a teenager. I borrowed thephrase “locked up inside” from a selective mutism E-mail support group I was part of briefly in 2003. (I I don’t have a diagnosis of selective mutism; mine is probably due to my autism-relatex anxiety.)
erda
4 September, 2010 at 1:04 pm
But what I don’t understand is the lack of discussion on how to live well with the disorder.
So true. There are all sorts of anxiety disorders that will never completely vanish no matter what the treatment.
Static Nonsense
4 September, 2010 at 2:47 pm
In situations where I can’t speak, I’ve usually managed with American Sign Language, text/writing, or using my DS. It helps a lot when I need to communicate to loved ones, but most store clerks don’t understand me and think I’m just being rude. It’s really frustrating.
And I definitely agree with the teaching children with SM sign language – if I had the chance to learn it when I was younger, it would have made communication so much easier for me even now. I can only imagine how many more people it would be helpful for.
tariq Smith I agree, it would be awesome to see more creativity regarding communication.Sharon Wachsler
4 September, 2010 at 3:33 pm
Thank you so much for this informative post. I hadn’t heard of this before.
In 2007, due to neurological damage from tick-borne disease, along with the loss of several other forms of function, I suddenly lost the ability to speak, *most of the time.* My voice would be gone upon waking up, and usually during the course of the day, it would slowly, croakily return. Sometimes, however, I could speak totally clearly in French or German or in song (though not when it was at its worst) and I could also produce unintentional sound (spontaneous laughter, crying out in pain), when I couldn’t speak.
This led almost everyone in my life, including many doctors, to believe that it was psychological. Some people felt I was doing it to be manipulative. Since I love talking, words, speech, etc., and suddenly lost control of many aspects of my life by being unable to speak, the whole combination was torturous. Even the SLP I saw was clueless, although he did *not* give me the “it’s all in your mind” line. I wonder now if any of them had heard about selective mutism (without really understanding it) and thought that was what was going on.
Cee
4 September, 2010 at 4:32 pm
Wow, thank you for posting this. I never knew what to call it or if anyone else experienced this.
kaninchenzero
4 September, 2010 at 4:58 pm
holy fuck my life thank you thank you thank you
Sasha Feather
4 September, 2010 at 7:53 pm
Thank you for all your wonderful and moving comments. It is true that this disorder used to be called “elective mutism” and was thought to be a willful choice not to speak. Some people still see it as a character flaw, which is plain ableism and very frustrating to deal with. I would venture to say that most people with anxiety disorders want to get along and please other people, not cause more social distress. If we could talk more to make others happy, we would.
Thanks for the mention of the Hayden books, Whirlwitch; I haven’t heard of those. Most books I have read that feature mutism in a character are instances where it follows a traumatic event: Speak by Laurie Halsie Andersen and The House of the Scorpion by Nancy Farmer are two such examples. These are both very good books and I recommend them, but I want to note that they are not consistent with my experience. I do not have trauma in my background. I believe I was born with this disorder.
Lauren
4 September, 2010 at 10:39 pm
I enjoyed reading this article, thank you for posting this and helping to spread awareness of this condition. I was diagnosed with Selective Mutism when I was in preschool. I was born 3 months premature and I theorize that the trauma of those first 3 months manifested itself as the selective mutism. I shared many of the same symptoms that you describe, most notably talking at home but not to anyone at school. I was treated with play therapy by a local psychologist, and I suppose it worked, though I can’t remember anymore. My “shyness” gradually got better over my formative years.
I don’t think I was “cured” though – there are still some situations where I experience the same sensation of being “unable* to speak – or, if I am able to, things come out very hesitant and garbled. And then there are many situations where I act very “normal” and can speak freely and accurately.
I’ve always been much more comfortable with – and better at – written communication than verbal communication.
I also often feel uncomfortable socially, as a geek woman. I agree that not always feeling comfortable in general contributes to episodes of muteness.
bluehook
5 September, 2010 at 5:27 pm
Some of what you say runs parrallel to my own experience. Although not to the same extent, I have difficulty initiating conversation and answering questions that require personal emotional opinion, yet have no problem at all in public speaking and can function much better in a group when I have a set role or part to play. I see this as all being a function of my Asperger’s Syndrome, along with social anxiety. Is it possible you have undiagnosed Asperger’s or another Autism Spectrum condition? Not that that would effect a ‘cure’ but might explain the origin of the difficulty.
permockable
5 September, 2010 at 8:02 pm
Thanks for writing this. Yesterday, I started writing up a thing about my experience with SM, but apparently that’s triggery for me, and it ended in a panic attack and deletion. So I’ll just say that it was seriously bad when I was a kid, and it’s something I still struggle with (I was 22, I think, when I had to communicate with my BFF and my now-husband via a notepad for something like 36 hours).
Also: I had no idea there was a term for this until you mentioned it a while back, and I had a major YANA moment — similar to the first time other people mentioned that they had phone phobias too — “really it’s not just me what.” So, yeah, thank you.
Sasha Feather
6 September, 2010 at 2:35 am
lauren, I identify as a geek woman too! Nice to meet other people who have selective mutism.bluehook, I absolutely think there are similarities between selective mutism and some aspects of autism spectrum/Asperger’s disorder; with difficulty speaking being the chief similarity. I’m not a physician and can’t really say what is and is not each diagnosis, although I am not on the autism spectrum, and I’m quite sure these are distinct disorders. I’m sure there are people who have both diagnoses. I also think those of us who have trouble with speech, no matter what our diagnosis or label, can absolutely learn from each other.permockable, I am so sorry about your panic attack! You are definitely not alone.Kaz
7 September, 2010 at 1:04 pm
Thank you for writing this post! It was very informative and interesting to read. 🙂
I stutter, and although I think that’s a very different speech disorder (I get a not-being-able-to-speak feeling but on specific sounds and words while I’m talking rather than any sort of general topic, and I can still force them out resulting in blocks) there were things I could really, really identify with in this post. In particular, your last paragraph had me mentally jumping up and down going “yes! Yes! Yes!” Dialogue around stuttering esp. in the medical realm also focuses pretty much solely on speech therapy, with *maybe* a little bit of stuttering acceptance thrown in but even that’s often focused on “if you feel less anxious about stuttering you’ll stutter less!” Which is ridiculous given the low success rate of stuttering speech therapy. Living with it – I’ve turned up a few blogs that talk about it, but in the speech therapy/professional realm it’s pretty disastrous. And alternative methods are essentially never, ever talked about. Any kind of typing-to-audio device, sign language, writing in place of speaking – only place I’ve seen these discussed is on disability rights blogs, and hardly any PWS (people who stutter) identify as disabled.
I am also sadly unsurprised to hear it used to be assumed people with selective mutism were doing it on purpose (and really hope that attitude’s not so widespread any longer). Again, similar things happening with stuttering – which is also variable, and where PWS are usually totally fluent in specific situations.
Also, re: autism discussion – I do sometimes experience a difficulty translating thoughts to words which I blame on autism, but I’m not sure how related that is. For instance, I think it actually causes more difficulty for me in typing than in speech – when I’m talking I can sort of shove the idea of what I want to say at my vocal cords and have something that’s at least closely related to it come out, whereas I’ll have months where I feel as if I’m barely able to communicate in text at all. Then again, I have no idea how typical this is for autistic people either.
Sharon Wachsler
7 September, 2010 at 6:37 pm
kaz – Yeah, when I developed apraxia, I already knew some ASL and became pretty conversant in it out of necessity. When I went to see the SLP, I said (through an interpreter), “I’m very lucky that I already knew sign so I can still communicate with some of the people in my life.”And he was like, “Not everyone signs, though. Don’t you want to be able to speak?”
Which I felt like was 1. Missing the point entirely (that I was grateful I had some means of communication, having suddenly become unable to voice), 2. Audist/oppressive attitude toward Deaf people, and 3. Obnoxious, because of course I wanted to be able to speak or why would I have been there?
So, with you on the bad attitude toward alternative modes of communication. The only doctor I saw of the dozens in that period who got that it was a blessing I knew how to communicate nonverbally was my PCP. Everyone else was completely freaked out, clueless, or even hostile to it.
Cassandra
9 September, 2010 at 9:43 am
Thank you for this post. I never knew there was a name for this specifically. I’ve always had trouble talking to people and have been chastised for what people see as me being stubborn and difficult. I wont ask sales people at stores questions even when I really need to and I have an incredibly hard time talking on the phone. I write out what I’m going to say before hand a lot of the time. I went through almost all of middle school without speaking. A couple of years ago I stopped communicating with almost everyone completely for months. The only people I had contact with were my parents and even that was limited. It was hard to recover from that because I’d felt like I had lost the ability to carry on any normal conversations. The internet has actually helped me a great deal. I joined some online forms and started posting as a way to dip my toes back in the water.
Sasha Feather
12 September, 2010 at 4:15 am
Thanks for your comments everyone!
cassandra, that sounds like a very hard experience. The internet has helped me a lot too, in being able to form friendships and feel connected to people, and to practice communicating. Yay internet!