Page 2 of 2 [ 24 posts ]  Go to page Previous  1, 2

vintagedoll
Blue Jay
Blue Jay

User avatar

Joined: 1 Sep 2009
Gender: Female
Posts: 81
Location: London, UK

09 Mar 2014, 5:17 pm

I hope I can offer some insight here.
I have suffered from Selective Mutism all my life, ever since I can remember. I am getting better, but it is something I shall probably always have to some extent. I experience it as a kind of phobia of speaking, a fear of the sound of my own voice. I can only speak for myself here, but for me there is anxiety about speaking but there is also a very severe social inhibition around talking and about how my voice sounds when I do speak. I don't like the sound of my own voice, and I feel very self-conscious about how my voice sounds to other people. I also find that when I am in a situation where I feel very self-conscious and uncomfortable about speaking, my voice sounds quite different to when I am with one of the few people I can feel fairly relaxed with. And this is something I have no control over. I feel I've got no control over how my voice sounds, or even over whether any sound will come out when I try to talk. The way I experience it, I feel as if there's some kind of obstruction in my throat and I want to keep coughing to clear my throat if I'm in an uncomfortable situation where I think I'll need to speak. Speaking is something that most people can take for granted, but for me it is nearly always a potentially embarrassing, shaming, humiliating experience.
I don't like the term 'Selective' Mutism because it implies that we are choosing not to speak, when in fact nobody would choose to live this way. Especially, nobody would choose the negative consequences which are many. I am also extremely sensitive to comments people might make about how quiet I am and about my not speaking.
I have improved, because as an adult it really is more embarrassing to not speak at all than it is to let people hear your voice. Also, I decided that I don't want other people speaking for me any more because that is so undignified for me; it makes me appear more disabled than I need to be and it doesn't help me learn to advocate for myself. But I only made that decision a couple of years ago and that motivation had to come from within myself. Pressuring somebody with Selective Mutism to speak, or paying a lot of attention to their not speaking does make the problem worse.
One movie that I have watched over and over is The King's Speech (King George V1 of England) because although I don't stammer, I really can relate to his struggle with speech.


_________________
Sometimes it's the very people who no one imagines anything of, who do the things no one can imagine.
From The Imitation Game


InThisTogether
Veteran
Veteran

User avatar

Joined: 3 Jul 2012
Age: 57
Gender: Female
Posts: 2,709
Location: USA

09 Mar 2014, 6:03 pm

Thank you for sharing your experience, VintageDoll.

I do appreciate everyone's input. I feel--though--that I still do not understand fully what is going on inside of my daughter's head. I guess what I will do is to continue not pressuring her when I suspect she cannot help it, and continue trying to understand what is happening when I suspect she is willfully not communicating and pretending it is because she can't.

But since more than one person has indicated a feeling of pain in the throat or throat tightness, it solidifies my belief that at times it is definitely selective mutism and she really can't help it. Certainly in those times, I can understand why pushing will only make it worse. She is already distressed.

Is there anything that makes it go away faster? Aside from not being pushed? She is genuinely distressed and it breaks my heart to see her that way.


_________________
Mom to 2 exceptional atypical kids
Long BAP lineage


cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 57
Gender: Male
Posts: 36,036

10 Mar 2014, 1:59 am

Marybird wrote:
cyberdad wrote:

This is yet another area where the use of general labels by so called "mental health experts" such as non-verbal or selective mutism seems to be prone to subjective interpretation.

Yeah, selective mutism seems to be applied any time someone who can talk doesn't, but the reasons can vary, although I've mostly heard it described as anxiety.

Yes that's what I've heard. It also impacts on people with PTSD and other types of trauma who shut down.



cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 57
Gender: Male
Posts: 36,036

10 Mar 2014, 2:01 am

InThisTogether wrote:
Is there anything that makes it go away faster? Aside from not being pushed? She is genuinely distressed and it breaks my heart to see her that way.

I think you'll have to ride this out. Your daughter will hopefully work it out sooner (rather than later). Perhaps give her examples to try out in simulation scenarios (I'm using this approach with my child) and it may eventually click for her.



EzraS
Veteran
Veteran

User avatar

Joined: 24 Sep 2013
Gender: Male
Posts: 27,828
Location: Twin Peaks

10 Mar 2014, 4:09 am

For me the ability is often not there.
If am under any kind of stress or anxiety, just makes it worse.
One reason why speech therapy is such an ordeal for me.
Speech under any circumstances has never come easy for me.
Think it has to do with that part of the brain not operating and having
to bypass those neural pathways to compensate.



pensieve
Veteran
Veteran

User avatar

Joined: 18 Nov 2008
Age: 39
Gender: Female
Posts: 8,204
Location: Sydney, Australia

10 Mar 2014, 5:52 am

I experienced something different with selective mutism and I consider I had the full fledged disorder. I wouldn't talk in school or to strangers and I spoke very little in the home. I think my undiagnosed autism also made me speak even less. I had a little mousy voice when I could actually speak in those places I was too scared to speak.

Now, I've sort of overcome much of my selective mutism although it still happens at times. If I'm under stress and am unsure how people will react to what I say I'll not say it unless under extreme stress and I scream it out. That never really works out either.

There are times when I will refuse to speak because I'm depressed and unmotivated and highly irritated by having to be around people. It's nothing I can really control. It must be upsetting for a parent to not know why their child stops speaking even though they don't appear to be mute for the same reasons as before, but they are probably under some sort of stress and can't speak because of that.

It also sounds like a shut down to me which can actually render someone with autism temporarily without speech. It's no longer anxiety that is causing them to be mute but it's more something physical happening in the brain. It rarely occurs in me these days though might if I have a seizure. Shutdowns usually occur when someone is under severe emotional or sensory distress.

People with autism can also have a co-morbid condition that makes them passively avoidant if under extreme stress when they are told to do something. This might affect their ability to talk too.

I think the best thing to do is minimize the anxiety by finding out what the triggers are. God I wish people would do that to me and not only laying off me when I tell them they're causing me to have a panic attack.

Vintagedoll, I remember one time when I burst out and screamed 'I hate the sound of my voice!' I might have every type of anxiety in the world now but I no longer feel that way.


_________________
My band photography blog - http://lostthroughthelens.wordpress.com/
My personal blog - http://helptheywantmetosocialise.wordpress.com/


rdos
Veteran
Veteran

User avatar

Joined: 6 Jul 2005
Age: 63
Gender: Male
Posts: 6,096
Location: Sweden

10 Mar 2014, 11:16 am

vintagedoll wrote:
Pressuring somebody with Selective Mutism to speak, or paying a lot of attention to their not speaking does make the problem worse.


I think this is the most important advice. That includes indirect pressure and "hints" as well. Pressure and "hints" won't help at all, but rather will make it worse. Find out what situations work, and try to make the one's that doesn't work into the one's that work. For instance, if there is a problem that she doesn't talk to people in a certain environment, try out the same people in another environment.



InThisTogether
Veteran
Veteran

User avatar

Joined: 3 Jul 2012
Age: 57
Gender: Female
Posts: 2,709
Location: USA

10 Mar 2014, 7:58 pm

pensieve wrote:
It also sounds like a shut down to me which can actually render someone with autism temporarily without speech. It's no longer anxiety that is causing them to be mute but it's more something physical happening in the brain.


She does shutdown at times, and you are right...it is different than the distress-type non-communication. This is when she withdraws. She looks spacey and her responses are delayed or nonexistent. Even her movements look...slow...or somehow out of sync. She loses speech then, although I have often wondered if she really loses speech, or if she loses the ability to understand she can/should speak. Her shutdowns almost never happen anymore. They are due to what I consider to be a combination of emotional and sensory bombardment.

Mostly I like to prevent her from getting overwhelmed or anxious, but that isn't always possible.


_________________
Mom to 2 exceptional atypical kids
Long BAP lineage