Lilo (they/he) Profile picture
Oct 4, 2018 18 tweets 5 min read Twitter logo Read on Twitter
So this month I'll be posting a lot about Selective Mutism, as October is #selectivemutism awareness month.

I'll start with this. Hi, I'm Lilo!

At age 3 I started preschool. Mom told the teachers I had speech problems (by which she meant I didn't annunciate properly)
When I never spoke in class, the teachers assumed these were the speech problems my mom was referring to, so they didn't mention it

It wasn't until months later that it was casually mentioned that I didn't speak. My teachers thought I was entirely nonverbal.
It was then my mom learned I'd never said a word outside my house.

Within 24 hours I had an appointment with the school diagnostician and got a Selective Mutism diagnosis.

Now, a little over 20 years later, I speak most places. But it's never been easy.
My pediatrician had never heard of the disorder when I got diagnosed.

She went to a special conference on selective mutism just for me.

It's a very rare condition. Many doctors and teachers don't know about it. This is why awareness is so important.
So... What is #SelectiveMutism?

Let's start with this - it's not a choice.

"Selective" implies to many people that a choice is being made not to speak. However, this is not the case.

The "selective" part refers to selective situations, NOT a selective decisions.
In other words, people with SM are only nonverbal in SOME situations.
This does not, however, mean the person (usually child) chooses to be nonverbal.

It is a complex and severe social anxiety disorder

It's not shyness. It's more extreme than that.

People with SM become so anxious in certian social situations, that they lose the ability to speak
A child can easily choose not to speak one day.

NO CHILD can consistently decide not to speak anytime they leave the home. No child would choose that. And even if they would, no child has that kind of self control.

SM is charecterized by repeated and consistent failure to speak
This is different than nonverbal Autism, in which children are consistently unable to speak or thoroughly communicate in ANY situation.

Children with SM can communicate perfectly fine in some situations, but consistently fail to so so in others.
Another common myth is that SM is a form of "mild autism"

This is not the case.

They are two separate conditions. SM is an anxiety disorder, not an Autism Spectrum Disorder.

While one can experience SM symptoms and be autistic, many kids with SM are otherwise typical.
Currently it is in the DSM V that Selective Mutism cannot be diagnosed in autistic children, because autism better explains nonverbal behaviors.

I respectfully disagree. Selective Mutism was my first diagnosis, long before my Autism diagnosis. I feel both are correct.
I experience both. Sometimes anxiety causes me to become nonverbal and I have SM symptoms.

Sometimes overload and processing issues cause me to become nonverbal, and I relate more to the autism symptoms.

I experience more than one way if becoming situationally nonverbal.
When I am experiencing overload, I cannot translate my thoughts into words. Someone can ask what I'm thinking and I literally don't know how to explain it.

When I'm experiencing selective Mutism, I know exactly what I want to say, but I can't say it. I can't make the words come.
If you think selective mutism is a choice, I want you to imagine a four year old, crying silent tears, and sitting in pain from holding their bladder so long.... But being unable to ask an adult to go to the bathroom. Eventually they get to a point where they can't stand.
If they stand up, they will wet their pants.

And they still can't ask.

They get home and Mom asks why they were crying. They tell her they had to go potty.
I had accidents until I was 13 because asking permission to go to the restroom was so hard.

You really think a 13 year old will choose to wet themselves in order to... Be stubborn? Make a point? Be a bad kid?

If you've never tried desperately to dry your pants off with the bathroom hand dryer, while crying about your failure to perform basic human functions properly... You have no room to talk.
If anyone has any questions about Selective Mutism, I'll gladly answer them.

#selectivemutism #selectivemutismawarenessmonth #smawarenessmonth #socialanxiety #mutism #nonverbal

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More from @AutisticFemb0y

Oct 6, 2018
So something to note.

Another thing about being situationally nonverbal because of Autism vs because of Selective Mutism.

When I have periods of being nonverbal and I can tell it's autism related... I can communicate in nonverbal ways - stimming, signing, writing, etc.
When I am having nonverbal periods due to Selective Mutism, it's not just that I can't speak. I can't communicate.

Some people with SM can communicate in other ways, it doesn't cause them as much anxiety as speaking.

But me? I can't write. I can't even show emotion generally.
This is one reason that I'm of the opinion that Selective Mutism needs to be treated, whereas Autism doesn't need a cure.

Most of my stress from Autism is external factors. Things I can remove and the distress will be gone.

Distress from Selective Mutism is internal.
Read 7 tweets
Oct 1, 2018

This whole fight to not consider Autism a disability, while noble in intent, is rooted in ableism.

In the idea that in order for autism to be seen as a neurological difference, we must separate it from disability.

In this ableist idea that somehow if autism is called a disability, it means it's a bad thing. Or less "normal" or that if we call it a disability, it's suddenly a problem that needs to be fixed.

Accommodated disabilities are not problems. There's nothing wrong with disability.
When you bodly claim that Autism isn't a disability, you ignore the experiences of the *majority* of autistic people who are disabled because they are autistic.

It doesn't matter what model of disability you follow. This is the world we live in. In this world we're disabled.
Read 9 tweets

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