• Understanding Autism from the Inside

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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.