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Semi-speaking or semi-verbal

Updated: Sep 5

I saw a thread on twitter recently that started "Still investigating what it means to be semi-speaking" and continued with a list of examples of what semi-speaking means for the OP. I found it very interesting for a few reasons. I first heard about this condition a few years ago, some people refer to it as selective mutism or being semi verbal. (I've added some info at the bottom as I now think these are two separate conditions) It is basically "an anxiety disorder in which a person who is otherwise capable of speech becomes unable to speak ... usually co-exists with social anxiety disorder." The condition is not specific to autism and not all autistics have this condition.

To me this seems like a very serious condition that can significantly impair a person's ability to succeed with anything in their life. So much in life depends on a person's ability to communicate with others. I also have no idea how to get help with this condition. In my experience you have to tell the doctors specifically what's wrong and describe your symptoms in a way that matches their diagnostic criteria. So if you're having trouble communicating or don't know the name of the condition, you're on your own.

One of the reasons I found the twitter thread interesting is I would never be able to write something like that from scratch because I don't really understand how non-autistic people think and therefore would find it difficult to describe what's different about the way I think. Its only when I'm reading or listening to autistic people and say to myself 'OMG that's exactly like me' that I realize I'm identifying with something non-autistic people do not experience.

So I feel somewhat, I don't know , envious almost? that other autistic people, much younger than me, understand themselves and their relation to others so much better than I ever will. And not only understand themselves but know what to call the condition and how to deal with it.

All of which is a long way to say how much I identify with the concept of selective mutism or semi-speaking. When I was a child people frequently thought I was mute, even doctors, and then would be shocked when I'd speak to my mother. In my late teens I remember being dropped off at home 20 minutes into a date because I was too quiet. Things like that have happened all my life. That's a lot of awkward silences.

So I edited the original list from twitter and added some new ones to make my own version of 'what it means to be semi-speaking':

It's not being able to put a sentence together internally and speak it in time.

It's being blank despite the pressure or necessity to speak.

It's only being able to contribute an interjection or answer yes/no questions.

It's knowing what the person wants to hear but not being able to summon it.

It's scripting important situations in advance because I can't rely on improvising and then being totally lost when the other person goes off 'my' script.

It's being mislabeled shy my whole life, even though it was much more than that.

It's the fear of being stranded somewhere or something unpredictable happening with nothing familiar nearby.

It's every single teacher/boss/manager assuming that my silence equated to a lack of understanding or an unwillingness to participate.

It's a total lack of friendships, intermittent friendships, or lost friendships because friendships require speaking.

It's finally getting to see a doctor face to face and then not being able to explain why I'm there.

It's nobody knowing my opinions, nobody knowing my personality, nobody knowing anything about me, because that requires conversation.

It's being completely unable to tell someone how much they mean to me even when I know I'll never have another chance.

As always, I'd love to know what others think of this topic. Please comment if you're comfortable doing so.

This post is getting a lot of attention so I wanted to add some info as I'm not a medical professional of any type. I saw these definitions:

selective mutism = becoming mute due to anxiety. selective mutism is always about anxiety. usually it is linked to a specific anxiety. for example, someone with social anxiety may experience selective mutism triggered by being in a crowd.

semi verbal = becoming nonspeaking or even unable to communicate in other ways (like writing). nonverbal episodes are not always triggered by anxiety. although anxiety could be a trigger, nonverbal episodes can be triggered by anything, or even have no apparent trigger at all.

And a link to an actual medical professional:

It seems like there's limited information on this topic so I hope this is helpful to you.

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