There is a person with a knife stood next to you. No matter what you do, you cannot get away from this person. And then when you talk to someone at school, the person stabs you with the knife. You get absolutely furious at them, but they're entirely blasé about it, and you cannot tell anyone about this person firstly because it's obvious that there's this person with a knife, and second due to fear of being stabbed again if you tell someone.
Then you try answering a question in class, and they stab you again. Eventually you realise that arbitrary though the rules may be, the only possible thing to do is obey this guys rules, despite them being stupid.
Let's take this further. This person is telepathic. Not only will he stab you when you do something against his rules, but he'll stab you even when you're thinking about it.
And to make matters worse, he's also invisible. You really can't tell anyone about him though. How'd it sound? "Mum! There's this invisible guy that'll stab me if I break his rules!" But, you guessed it, he stabs you just for attempting.
There is a catch! You discover that in some places, and with some people, he'll relax his rules!
This is an anxiety disorder, specifically, Selective mutism.
It is a childhood anxiety disorder characterised by an inability for the person to talk in certain situations, for a long period of time. This is generally more common in girls than boys, and can easily go unnoticed and undiagnosed for a long period of time.
A. Symptoms
1. What are the physical signs of the illness/disease/disability?
Physically, there are rarely any ways of seeing if someone is selectively mute. One of the major characteristics is that the person does not do this for attention, it is entirely the opposite.
2. What is the manifestation of the disease indicating the nature of the disease?
In a certain situation, circumstance or even just in a certain place, the person will be unable to speak. When confronted about this, in the situation, the person will generally find them self unable to speak even more, despite having entire faculty of speech, full knowledge of the language and may even know exactly how to say what they are wanting to say, but simply cannot make the words form.
Sometimes there will be a "safe" location or a "safe" person or "safe" context wherein the person is able to speak freely.
Another indicating factor is that it is easily mistaken for autism spectrum disorders.
During childhood, the disorder is often manifest by the child not talking in class, not talking to their peers, and not talking to their teachers. It may be noticed that in certain situations such as if asked a direct question with no ambiguity in the answer will the child answer, or if there is a particular person they will talk to exclusively.
There can be a self enforced reclusion, and if untreated, this will develop into habits where the child learns where, when and how they feel capable of speaking.
3. What is noticed first by the patient?
I have this disorder and at first I found that in most situations I would not speak to people at school, especially teachers, except if they asked a question to which I knew the definitive answer. For me, this was Mathematics, as there is always only one, correct answer. In a Maths class, for instance, I would find that whilst I could state the answer, and explain it to the teacher, if asked by another student, I could not tell them, at best I could gesture, or communicate in writing. In primary school, one of my teachers dubbed me Mr Daydream, as I always appeared to be lost in thought. This was because often I would want to join in with conversation with others, but found I couldn't, so I would join in mentally. Occasionally when I grew older, I found that sometimes I would drift off in one of these virtual conversations then blurt out something, that would then make absolutely no sense to the others in the group, as they would not have heard my end of the conversation in my head, and what I blurt out would often come out garbled. The thing I noticed most was the frustration at being unable to talk. Whilst with certain people, I found it easy, with others, I would find it impossible.
The main issue that has to be conveyed in my feelings at these times is that there is no choice. I do not chose to not speak. It is not because I seek attention, it is not because I am stubborn, it is not because I refuse to speak. It is because I cannot. It is the same way in which a deaf person cannot hear (having also experienced this, I feel confident in stating this), I cannot talk in these situations. I cannot force myself, no amount of will power will allow me to. In the same way as with deafness, even if you yell and scream, the person will still be incapable of hearing, no amount of trying will allow it. I find quite the opposite, the harder I try, the harder it is. Often the act of trying can induce panic attacks.
On a side note, one feature of anxiety disorders are panic attacks. These are usually a physical response (whether real or just felt) equal to that of extreme terror and/or trauma.
This can be from a vast array of life threatening situations, none of which are occurring, but trigger the "Fight or flight" response, flooding the body with adrenaline and other hormones.
For me this generally manifest itself in a feeling of, in a cliche, "impending doom". For anyone who has experienced a moment of extreme danger such as suddenly finding yourself facing unexpected oncoming traffic, with only a moment to react between being alive and road-kill, it is only then that this term has a real meaning. Whilst over used, this term holds a terrifying meaning to a person experiencing a panic attack.
The worst thing I find about a panic attack is that it could be triggered at any time, for no apparent reason, yet feel entirely real, yet knowing it is entirely false makes it worse. Whilst with the above described situation, it is easy to resolve, you dodge the traffic, crisis averted, with a panic attack there are only two possible responses. Run away as fast as you can and hope it's OK, or shut your eyes and pretend nothing exists.
The very nature of Selective mutism is that The person does not want to be noticed.
I have found that in the situations, I will do anything possible beyond talking, to fade as far into the background as possible. Jumping up in a classroom full of watching people, and fleeing terrified from a classroom for no apparent reason does not feel at all hidden.
For me, panic attacks usually occur as such, I will feel a sense of dread and sudden danger from everywhere. Then my heart rate will feel faster, my breathing will become short and fast, or even stop completely, it often become painful to breathe. Then with there being no logical reason, I notice these and feel that it must be a heart attack or an asthma attack, despite neither being prone to heart attacks, or asthmatic. But knowing this does not help, as the increased uncertainty increases the sense of panic, making the symptoms worsen.
This sensation is incredibly powerful. It can hold a very tight grip on a person.
Over the years this has made it incredibly hard for me to socialise. As a guy, the main non verbal methods of socialising are sports. When younger, I could play games like tag, bouncing around pretending to be fleas and such like. But as I've never been keen on soccer, the main male socialising activity in these parts, until later on, when all socialising had to be verbal, things have always been difficult. At my first school, I found myself able to communicate mostly only in Maths lessons and for a while with a guy named Douglas, who moved away. I also found myself able to talk to a guy in my class, John, outside of school, as well as one of my brothers.
This inability to talk was originally dismissed as a side affect of frequent ear infections, temporary deafness etc. and I was a very late talker, not beginning until the age of 4. However, when I did talk, I spoke in entire sentences. This hints at my having been capable of understanding speech, capable of using speech, yet not having used it.
At my secondary school, I found myself only able to reply to people. I could not initiate a conversation, the other person had to speak first. I could not speak to any teachers outside class time, I could rarely answer questions, especially those with any ambiguity. During class, I found I could only talk to one person exclusively. Outside class, I found I could only talk to two different people,one being the same as in class, yet found it always OK to order my meals at lunch time. But to the people I found I could talk to in school, I found myself only able to talk to them quietly.
At around the age of 14, a peculiar circumstance occurred, wherein I contracted a virus that made me lose my voice for a long period of time. I'm not entirely sure how long it was, as after that, I found myself unable to speak normally near people. I could only whisper, and almost exclusively to the designated safe people. At times I could indirectly address people by talking as if to the safe person, or relay a message via that safe person, such as if the teacher asked a question, I would whisper to him my answer, and he would tell the teacher.
When it came to speech therapy, I found myself unable to practice. I simply could not, in the same way I could not speak to people in certain circumstances. I was referred on to counseling for a long period of time, around 3 years, seeing a counselor at least twice a month. At each session I would say very little, finding myself only able to say a sentence or two in half an hour. At the end of those three years, the people who had worked with me came to the following conclusion, which appears to sum up the condition in general terms:
"We have come to the conclusion that we could diagnose you with aspergers syndrome [a form of autism], yet we know it is not. We can't diagnose you, but we feel that this diagnosis, whilst false, would be a useful label".
At other times, I had been called "Awkward", "Stubborn", told I was doing it to get at my parents, or out of mischeif, or attention seeking.
It was never for any of these reasons. It was always because I found it impossible to speak. And the worst thing is, that even now, I find it incredibly hard, and still rarely speak much louder than a whisper. Yet I still find that there is absolutely no choice for me. To me, it seems similar, almost, to an addiction, yet there is never, will never be a high from it. Whilst a smoker may have a choice not to smoke, they won't just not smoke. In the same way I find that I just cannot speak. There is no deliberating, there is no reasoning. It is just how I have to behave to feel close to "normal" in these situations.
There is always a feeling of being trapped by my own body.
Author notes
1. If you give permission or not for your work to be showcased in our people with disabilities group forum.
Yes, I give permission.
[And I'll try my best to finish this soon! I haven't forgotten about it!]
2. List three references that you have used to research your work.
3. What part of the suggested outline above have you used, or all of it; or have you chosen to write in your own format such as a story-like, humanist approach.
A contest entry
- Writing Workshop On Disabilities Fall, 2008 by kareneisenlord.
3500 points, ended November 15, 2008, 11 entries
Honorable winner
• next poem in this contest, remove from contest
Please tell me what you think
Comments
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Please put in your Author's Notes whether you give permission for this to be showcased in the disability group forum. You can request that it be done anonymously. I hope that you can complete this. As I stated before, it is near complete.
It just needs to be ended somehow with a closing statement/summation. You left it hanging.
I appreciate your efforts and that you entered the contest. Regards, Karen -
Wow this taught me a lot. I didn't know you had Selective Mutism! I guess I just figured you didn't because you've always sent me so many hugs and chatted with me a lot, that I didn't figure you didn't talk much in the real world. This seems like a lot to go through.
I'd never even heard of this before I read this. It was very informational and interesting to read. I learned a lot. I think I might have a friend who has this. She sits at my lunch table every day, and although I have no classes with her, we're friends. Sometimes I ask her a question or talk to her. She looks up at me nervously and speaks very quietly if at all. I think she may have this. Should I talk to this person or let her be quiet? I feel like I'm making her uncomfortable when I do and I don't want to do that. Any advice?
Thanks for sharing this read! Wonderful work you have done.
~pANDY
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Mhmm! On the internet, in general people don't count as people because they can't see me! I can say so much more here than out in the world.
My advice would probably be first off, not to not talk to her. But maybe try talking about things that aren't personal, or things where she doesn't need to talk too much like if you're telling a story or something like that. Even if you're just directing things to her and letting her join in non-verbally.
But it's very difficult to say how you should go about it. I know that for me, I often have felt horrid when people ignore me because I don't talk, but also feel bad too if they have to make special considerations because they notice. It's a real sense of helplessness!
It's really difficult because the "safe" people I find usually have to start safe, and I've had to find them. Like I just get a feeling from listening to them with other people that they're a safe person.
So trying to become a safe person is really difficult. I think though that if she talks to you at all that's a good thing! Especially if she's ok eating with you. I think that all the other people with selective mutism that I've spoken to have found it difficult eating in front of people too.
But anyway, so long as you try to include her in any way, then that's the best thing you can do! But making an extra fuss over her won't help!
I've usually found that it's got to be either all or nothing kind of thing. Like if someone's going to give me different attention than others, it has to be one on one, else it's really difficult to talk, even with a safe person.
Thanks!
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My sister had this when she is younger. At one point she asked my mom in a store if she was allowed to talk there. Thank you for writing on this.
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I have learned something!
This is fascinating - and I have never heard of this before now. I can understand how it is confused with autism which as a pediatric occupational therapy practitioner, the diagnosis of autism is one of the "catchalls" of our time; kind of like shizophrenia was at one time until it was understood more.
I have a few questions; is the entity that stabs you if you don't follow the rules, metaphorical to how it feels for you; or is there an actual being that does this to you?
I assume that writing is one way that you get around the "rules", from what you have stated here; and that the beginning stages of therapy involve e-mailing etc.
Am I correct in my understanding of what you have said here.
This is really interesting, and I am looking forward to more information on it. Your piece is almost complete within itself although I know it is still a work in process, (as you state clearly). I can't wait to read and understand more first-hand of what treatment is available and the outcome of treament.
I love the examples and anologies that you use and the humanistic, first-person approach interlaced with factual information.
Elect mutism is something I have heard of; but Selective Mutism is altogether a different one. A lot of mysteries begin to make more sense to me...
It really must be very difficult to deal with. Can you write out what it is like to your therapist? Are there any "rules" when it comes to writing too? Apparently not. -
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Thanks muchly for reading!
The person stabbing is just an analogy to make it easier for others to understand.
There isn't a sense of an external entity dealing out some kind of punnishment, it's more a feeling akin to standing on a cliff edge over jagged rocks. You see the rocks, you know you shouldn't jump.
It's the same feeling, except there's no cliff or rocks.
Whether or not you see the rocks, you still see the edge, so you don't jump. You just can't make yourself jump.
Someone tells you "It's ok to jump!" but you see the edge and can't.
You try to jump and you still can't. You try harder, and you feel terrified of the drop.
It's closer to that kind of feeling.
The rules apply to writing too, for instance, what I can write here, I could not write on a note and give to my Mum. I couldn't print it out and give it to my Mum. I could not write out the URL and give it to my Mum. I could not even write the note, give it to someone to give to my Mum.
If I know information, thoughts, feelings, words, etc. will within reason be able to reach someone that isn't 'safe' for this information, I simply cannot make myself do it.
For instance, with the therapists I saw when I was younger and I knew they could tell my parents anything I told them, so anything I couldn't say to my parents, I couldn't, or would find incredibly difficult, to say to the therapist.
However, I find it easier in writing than in spoken words.
When I've been very upset and can't say what has to be said, I have to trick my way around the rules, and force things onto paper, and then I find it difficult not to try and pretend it did not happen.
An example of this would be that I had a lot I needed to tell my parents so they could help me, but I couldn't tell them and I couldn't write it to them. So I wrote it in my diary when no-one was looking, then I copied it onto paper later on, then I got very upset and gave it to my parents.
And also, it has been termed in the past as "Elective mutism", but this has given specialists the impression that the person has a choice, thus the change of name to selective.
There is absolutely no choice in the matter. It's not a case of "will not" it really feels like a "can not", in as much as the above analogy. You can not jump off the cliff.
I'll explain the therapy in more detail soon! -
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That's very enlightening!
I can somewhat identify with this having obsessive compulsive disorder in various degrees since I was a kid. At it's most extreme symptoms it is a little like how you feel about following rules. It's like a part of ourselves is a cruel tyrant forcing us to do this. It almost sounds like a part of you is telling you that no one can be trusted that is close to you and therefore the rules apply to anyone who comes into contact with anyone close to you. Something like that.
With me a lot of it has had to do with control and trust issues; feeling profoundly betrayed and not able to place confidence in those who should have my well-being at heart. In fact, it was the other way around, because those who were close to me abandoned and hurt me because of their own dysfunction and issues. This is scratching the surface a little and I know that your condition, and mine, are very complicated and layered. I am not saying that this is the case with you.
I have also dealt with panic attacks in relationship to my disorder. That is a big thing to get some kind of handle on and usually cannot be done without some kind of intervention.
Have you ever tried breaking the rules to see what would actually happen? Maybe just a small one that you can control the outcome of easily. I know that is a lot because there is so much at stake. With me it was something like my mother would die if I broke the rules, or even now I catch myself - and there is always some dire, tragic event looming over me; that is my responsibility to keep from happening or just by thinking something it may happen. (Intrusive thoughts). I really can be quite a nightmare; and it always is worse when I am tired, sick and/or depressed. It's like I have to be strong and fight these tyrants that are always doing this to me. I wonder sometimes if it is an internalization of some abuse that I went through as a child. It most likely is, for me.
Like you, I have a system that works for me; that has taken years to develope. I am always modifying it too. And my OCD doesn't seem as bad as it was when I was younger; but still it gets triggered somewhat when I am stressed in some way. It has helped me alot just to realize that I cannot control everything all of the time and to believe that there is a power that goes beyond all of this that has my best interests at heart. In fact I have most things down to a short ritual (usually involving numbers) and a prayer after I have done my best within human reason. I try not to be too hard on myself and to love myself, even when at times I feel no one else does. It's taken a lot of practice and many years of working on it.
I can't wait to read what else you are going to write about your condition.
I am looking forward to it. -
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I find that the rules are far more subconscious. It's rarely a feeling of if I do this, that will occur. It's more that if I try to break the rules I'll have a panic attack, and/or my mind will go completely blank so I'll be unable to talk either because I've lost the words to say, or the panic has set in.
But yes, I'll hopefully work on this more soon! -
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Hi there!
Just wanted to inform you in case you didn't know; that this contest is due to close on October 20th for judging. You can ask me for more time if you need it. If I don't hear from you I will be closing the contest on the 20th. Best of luck! Karen
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Thanks! I'm not sure how long it will take me as I've started back ast University again! But I'll hopefully have it completed by the 20th!
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