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Talking About Selective Mutism: What is your experience?

Let’s talk about Selective Mutism—I think this is a subject that many do not really know much about.

 

What is Selective Mutism?

“Selective Mutism…is the temporary inability to speak. This is more than just being quiet, it is more like a seizure, and it physically hurts when this happens, especially when we are younger.” ~ Rudy Simone
22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know
(Kindle Locations 836-837).
 

What is happening to me?

 

The first time it happened to me my brother took me to the Emergency Room.

I was in a flea market that we opened (that’s a whole other story) and I was characteristically obsessed with rearranging the place. I would stay there for days only coming home for a few hours to sleep here and there because in my mind I was never done.

Because I was medicated into insensibility due to yet another wrong diagnosis, I cannot remember what I was doing there all alone past 10 o’clock at night.  I was apparently folding clothes in the after dark.  

I was exhausted, I hadn’t slept in days, and I remember wanting to go home but I couldn’t because I was not done. No-one would stay longer to help me; after all they had been there since 6 a.m. I was in a complete medication-induced psychotic mania.

Not being able to stand any longer, I laid down on the floor in the dark and cried.

I don’t know how long I laid there before my brother found me curled into a ball and unable to speak. I so desperately wanted to but I couldn’t—no words would come, only tears and a lump I couldn’t swallow.

Thinking I was having some sort of breakdown (maybe I was, but looking back it seems to me more of a massive meltdown) or a stroke, he called my husband who met us at the Emergency Room. I waited speechless and terrified with my knees drawn up to my chest on a chair in the waiting room.

My husband arrived long before I was seen. It was a very long wait, had it been something more serious, I would have died there without being triaged. By the time I saw a nurse, some, but not all of my ability to speak was returning. My brother was explaining what happened, and how he found me.

The nurse sneered at him and said, “I need her to tell me,” flipping her chin and nose up at me.

Well damn it wasn’t that the problem! I was having trouble speaking!

I admittedly don’t remember much about that night, but I will never forget what she said next.

“It’s not that she can’t speak, she refuses to speak,” and then she got her big butt off the chair and stormed from the room Iike I personally offended her.

Doctor’s Explainations–they had none!

This incident happened before I had any inkling that I had Asperger’s Syndrome, and I certainly had never heard of selective mutism before.

The next day, a report was sent to my physician who then called me to ask if this had really happened. (At least, he was concerned) I was referred to a neurologist, he found nothing. Then to a psychiatrist (you would think maybe she would have had a clue—no), she said I must have had a small Ischemic episode. (a mini-stroke really?)

I am thankful that to date I have not had an episode quite as severe before that time, or since—but I have had episodes. They are usually preceded extreme or prolonged stress, either physical or mental. 

I wonder if this is partially the reason that during childbirth I enter a semi-mute state. I labored with my three children in near silence, and became quite irritated and semi-unglued if someone tried to talk to me or worse, ask me to speak.  I can’t tell you if that is in anyway related to the selective mutism that I experience after prolonged stress or during severe sensory overload, but I thought it was an interesting little observation.

Does anyone else have any mutism experiences they can share? I wonder if some of us experience this to some degree without really recognizing what is happening, or knowing there is a name put to it.

Blogging to Know I am not Alone

Please share your experiences.

“Alone. Yes, that’s the key word, the most awful word in the English tongue. Murder doesn’t hold a candle to it and hell is only a poor synonym.” ~ Stephen King

 

 

Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.

18 Comments:

  1. Mornings. Some mornings I wake up and some of my symptoms are good and strong. My throat feels paralyzed and it’s very painful to force myself to talk. It hurts my throat, my jaws, my lungs, the whole system. Even whispering hurts. After an hour or so my body wakes up and I’m fine. Some mute mornings come with aggravated sensory issues, sometimes it’s just a mute morning. No stress and no apparent trigger other than the fact I just woke up.

    I don’t know why they call it “selective mutism”, because that implies it’s willing.

    Rarely it will be due to stress, and it’s a ton of stress that triggers it. Hours of being told I’m worthless and other charming experiences. I never go full mute and in this case it is more akin to choosing not to talk. I just glare at the person who is being rude until they go away since they’re not worth words.

    • I am with you! There is nothing SELECTIVE about it, and gives the impression that we are just being difficult and refusing to talk! Drives me nuts. I will say, for me, I found it very much tied to stress but the kind that I am so overwhelmed by, injustices, and helplessness that I can not longer get any words-only tears. Painful lumps, and frustrating…not fun.

  2. Yup!! I was selectively mute for about a year or so,. I only spoke to my Mom to relay messages to other people. Didn’t talk to anybody but my parents. I didn’t know it was weird. I just didn’t talk, I was too anxious. However, due to my child-like ignorance, I thought it was normal. I dunno, I just never noticed I was different. This was from ages 14-15 or so.

    • I should have written a few words (at least) along with the above link. This is my story. Many memories came up, quite suddenly, at age 50 or so. Memories of overwhelming anxiety and humiliation. No skills to deal with situations. I was a girl with no defenses. Too sensitive. My parents just thought me extremely shy. They didn’t know. I can’t blame them.

  3. My 16 year old daughter has experience this. I’m so glad to find this, because the Dr would look at me as l was nuts. Can you give more pointers on how to help raise a daughter with aspergers I look and read and research and listen to her. To help. Thank you. Mom friend research with the gift of a Aspie daughter

  4. Hello
    I have enjoyed reading your writing today.
    I have both diagnoses of selective mutism and aspergers. I think you may find some sense of ‘relating’ in my book
    “Under The Banana Moon, A True Story of Living, Loving, Loss and Asperger’s”
    http://www.amazon.com/Under-Banana-Moon-Living-Aspergers/dp/1469985144/ref=tmm_pap_title_0
    If you check it out let me know, and feel free to write me personally anytime
    [email protected]

    • Thank you so much Kimberly! I will be checking out your book very soon, I love to read about other’s experiences grow with autism. You can read mine as I write it (blogging it as I go along) at http://www.aspiewriter.wordpress.com

      There should be a link to it on my Twirling page, but I have just migrated (literally last night) to WordPress and am trying to figure this whole thing out…hope I have everything working right.

  5. I know, that in extreme situations I cannot speak. Somewhere along the line I’ve learned to recognize it when it happens and automatically I don’t even try to speak. It no longer hurts me, but that’s just me. Unfortunately the times it happens are incredibly frustrating to whoever is expecting me to say something when in fact, I can’t. I’ve never known it was an actual condition, I thought it was merely the intense internal conflict that left me with no way out and no recourse but to not talk. Fighting it does physically hurt but I had the fight taken out of me years ago. I’ve never been diagnosed.

  6. Honestly, I find it difficult to even talk about instances of selective mutism, because it’s usually connected to traumatic (for me) experiences. I don’t experience physical pain, just..fear..fight-or-flight type feelings. Wishing I could say something but not being able to. Extreme systems overload. 🙁

    • I can understand that! For me too, it has been connected to extreme systems overload, which follows traumatic events. In addition, sometimes speaking of the events, re-living the events, will actual cause an overload all over again. Emotions, stress, and outside “noise” can all be triggers.

  7. I’ve never been told I have selective mutism but I have often wondered if I do. Very frequently when I’m around people, if I try to talk I get a horrible unbearable pain in my throat that prevents me talking. It feels like my throat has closed up completely and if I feel I have to force myself to talk my voice comes out as a pained squeak and the tears begin to flood. Tears from the pain and the overwhelming anxiety.
    I get it most when I’m in a classroom situation. Even if it’s just me and a family member, as soon as they start teaching me something my throat closes. Perhaps caused by the horrific time I had at school. I’ve been told it’s my brain’s way of protecting me when I feel threatened.

    • When others have described to me what happens to them, it sounds very similar to yours. Most of the time, for me, it is related to my stress level and anxiety.

      It could happen in social situation (classrooms, etc.) where I am “stuck” when expected to speak. It also happens to me when my senses are completely overloaded. This happens to me whether or not I am in a social situation. Many times I am in my own kitchen with only my immediate family there.

      In either situation the tears of frustration usually fall. Now that I understand better what is going on though, the anxiety and panic that used to follow it is lessened. I no longer think I am having a stroke and going to die. That was never a good feeling!

  8. AN AFTER-THOUGHT:

    I’ve been thinking of the first time I experience selective mutism–well it probably wasn’t the first time, but it was the first time it was extreme and I knew something was wrong. Looking back at my childhood through these new Aspie eyes, I can see that there were many times that selective mutism played a part in those rare times of “quietness.”

    • Hi my daughter had selective mutism until she entered kindergarten but even then she rarely talked and just whispered. She was never officially diagnosed with it because I lived in a Podunk small town I think if I was living in a bigger town or city with more resources it would have been officially diagnosed. She is 14 now and is still very quiet doesn’t talk a lot at school or with her teachers. Certain teachers that she’s very close to she will talk a little bit more now that she’s older . I’m wondering if she’s still suffering with symptoms of selective mutism because of her anxiety. I just wish she could find a friend. She is very depressed about it. I really enjoyed your book my sister sent it to me to help me to better understand my daughter and believe it or not although not as extreme I was able to relate to a lot of what went on in your childhood especially when I thought about my own childhood and struggles and difficulties I had. Even today I call myself an introvert and have a very small circle that I associate with an even then sometimes I don’t associate with them. It’s all just so exhausting especially talking on the phone and being socially active

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