#autistic speech loss

[atypical-irritant]

A friend of mine, while discussing my frustrations with feeling as though there are no terms or communities for people like me, mntioned that I should try reaching out rather than searching blindly until something matches. Though I'm not personally fond of that sort of attention seeking, I suppose a general crowdsourcing wouldn't hurt.

For context, I am apart of a system, and one of my more general traits is that I'm a symptom holder for speech loss episodes associated with our autism. Prior to my formation, these were a system-wide issue. The running theory is it was safer to delegate these episodes to one person who was more capable of handling whatever altercations arose from this.

As a result, I don't speak at all. I previously considered this a choice on my part but have since realized it's much less in my control than I initially thought. Just to clarify, I'm not selectively mute as that is an anxiety disorder and I am not by any means anxious nor does my speech difficulties correlate to any particular situations or settings. There are alters in my system who have rather severe anxiety, but I am not one of them nor is their anxiety the cause of my speech loss. And though I occasionally am physically capable of speech, never do I actually use that ability, regardless of the impact that may cause.

The issue is I can't seem to find anyone else like me. Most posts I find either center around selective mutism and the anxiety that goes along with it, are those entirely incapable of speech due to bodily limitations, or are those who fluctuate between speaking and not.

So basically, I don't relate at all to anything I've found. In fact, all I have found has nearly repelled me from continuing to search. The debating on who can and can't use what terms, though understanable on its own, erases and overlooks situations like mine. I'm sick of it, but I'll save that rant for another post.

If anyone else out there is like me, who never speaks though rarely there are times they possibly can, please feel free to interact here. Or just anyone who's mutism isn't linked to anxiety.

[clownrecess]

Giving nonspeaking kids and kids with difficulty using oral speech access to AAC as soon as possible needs to be normalized.

Of course you want your child to communicate, that's fine, that's GOOD. But oral speech isn't the only way to do that, and refusing to give your child a way to communicate because it isnt the form of communication you favor isn't okay.

Its OKAY if your kid never learns (or relearns) to use oral speech. ITS OKAY.

"But I put them in speech therapy to learn to talk! I don't want them to use that tablet all their life. They need to learn to talk using their mouthparts." Why??

First of all, AAC is proven to actually help people develop language skills and oftentimes oral speech. So any concern about AAC hindering development of oral speech is uncalled for and irrational. But along with that, ORAL SPEECH ISNT THE ONLY GOOD FORM OF COMMUNICATION!! AAC is good. Sign is good. Etc.

Saying otherwise and/or preferring your child to use oral speech IS ableist, and yes, it IS harmful to everyone.

[neuroticboyfriend]

this is from the last post i reblogged, but here are alternatives to "going nonverbal" or "going nonspeaking:"

verbal shutdown

loss of speech / speech loss

situational speech loss

if anyone knows any others, feel free to add on. if you don't understand why alternatives are needed, please see the linked post; it's a long one which is why i made another post with the alternatives, but even just reading part of it shows you why.

be kind to your neurodivergent and disabled peers.

[dreamdropsystem]

the struggles of being autistic in a speech obsessed world

[crip-wizard]

This is a vent post

I was sitting in french class, and the person behind me (a known "popular kid" and asshole) was chewing gum. Very loudly. And I, being the dirty little misophonic I am, asked them politely to stop, to which they ignored me.

So, I ask again, this time specifying that certain noises cause me physical pain because of my misophonia. So they do it LOUDER.

At this point I am ready to launch a full blown nuclear war upon this bitch. So I slam my headphones on and march out of the classroom.

Later, the French teacher (also one of two vice principals) comes outside and sits right up in my space. I am thoroughly in the depths of a meltdown and have gone into verbal shutdown.

This lady tells me to calm down and act reasonable. She knows I have misophonia and autism. I pull out my AAC (an app on my phone) and explain that the kid was purposefully triggering my misophonia and that my response was perfectly reasonable to the situation.

So, being the well trained cog in an oppressive system, decides that her physically disabled, unofficially (as it's quite pricey, but it is on my file) diagnosed Autistic student, is faking it for attention. The Vice principal takes my phone (and AAC app by proxy of being on my phone, and therefore taking my current only form of accessible communication [can't just write it cuz dysgraphia] so I cannot communicate my needs.) And gives me a detention for "making a scene".

[jasper-is-autistic-old-blog]

howdy friends!

amongst other things, it is AAC awareness month! if you would like to, please reblog or comment how you use AAC to communicate. this can be high tech or low tech, full time or part time. even sign language if you want!

here's a short definition of AAC:

AAC stands for augmentative alternative communication. it can include any method of communication that replaces or adds to verbal speech.

from Wikipedia: AAC is used by those with a wide range of speech and language impairments, including congenital impairments such as cerebral palsy, intellectual impairment and autism, and acquired conditions such as amyotrophic lateral sclerosis and Parkinson's disease. AAC can be a permanent addition to a person's communication or a temporary aid.

if you have any questions about aac, feel free to ask me! i can either answer from what i know, or do my best to help you find the information online.

i'll go first:

i am able to speak sometimes and often use verbal speech with my family. when i can't, i usually text them. i also use high and low tech aac. i use AAC when im out of the house and need to talk to someone who can't understand me or when i can't speak at all.

my low tech aac includes communication cards with simple words and phrases.

my current high tech aac is an iPad with the app TD Snap. i am using the free trial, but i hope to save up the $50 to buy it! i use AAC to have conversations, to talk to myself, to order food, and to ask for help.

what is your experience with aac?

[donniesexceptionalmind]

"Apologies, I lost my vocal files. Speaking won't be possible today."

Take care of yourself. 💜

[crazycatsiren]

Honestly, hissing and growling like a cat to express displeasure on speechless days works for me. 🤷🏻‍♀️

[clownrecess]

Hi! My son (9) uses an AAC device at school to help him communicate and for teachers to communicate with him. Do you have any advice for parents?

I'm sorry if this isnt very organized, I'll just be listing off and talking about what I wish my parents and adults around me did when I first started using AAC.

I also apologize for the kinda sorta late response. I haven't been doing too well lately, and I also wanted to make sure I said everything in this post how I wanted to say it. Those two things combined slowed down the process a bit.

1. AAC is not a language. However, it functions a lot differently than the oral version of the language that is being used at times, and I feel like thats important to recognize. AAC grammar doesn't need to align with "typical" oral grammar or speech patterns. As long as (most) others can understand what's being communicated by the AAC user, trying to get them to add in words like "The" really isn't necessary. Of course if they want to develop more proper grammar and more language that is super cool. But a lot (of course not all!!) of AAC users I've spoken to, including myself, find it really frustrating when people try to slow down and make it harder for us to communicate by adding in extra words. If its understandable, and the user doesn't want to, it isn't necessary (I also do want to add that I personally do use proper grammar most of the time, but a good portion of the time I don't.).

2. "Encourging the user to use their device" does *not* mean ignoring them when they don't, and/or telling them to "use their words". All communication is good communication. Pointing is good. Body language is good. Drawing pictures is good. Etc. Encouraging use of an AAC device in a good way means making sure it is always available, making sure the user knows it is an option, that the user knows how to use it, and that you respect the device *FULLY*.

3. Oral speech should not be the goal unless the AAC user wants it. All communication is equally good, and favoring oral speech is ableism. If the AAC user WANTS to use oral speech, then that is super cool and then there can be a goal of developing and/or improving their oral speech. If they haven't made it clear that it's something that they personally want, don't try to force it.

4. Stickers!! This one is more silly than serious, and of course it's up to the user, but if they want to put stickers on their device, allow it. Its cute!

5. ACCESS TO VOCABULARY IS IMPORTANT. Limiting someones language to "Eat" "Drink" "Bathroom" "Mom" "Dad" "School" or similar is not okay. I've seen someone on YouTube who didn't even let their kid have a "no" button. I fully understand that not everyone is capable of using complex language, and for a lot of AAC users, only having simple words and an easier to navigate (by having less options) device is important. And that is PERFECTLY OKAY!! But what isn't okay, is assuming one is incapable of using more language than "eat" and "drink". If they can not communicate their wants and needs when they understand that, they need more buttons. If that means starting to SLOWLY add a little more, that's okay.

6. Be patient. AAC takes longer to use than oral speech does. Even if the time we are taking is frustrating, don't show that. And yes, this includes guessing out loud what we are going to say by trying to finish our sentence whilst we are still typing (unless the user has expressed this is okay with them.).

7. Make sure teachers and other people know not to take away their AAC device under any circumstances! Doing so is the equivalent to duct taping someones mouth shut or removing their vocal chords. It's scary.

That's all I could think of. If other AAC users (not parents of them, not friends, etc. ONLY AAC USERS) want to comment or reblog with more tips that would be greatly appreciated! <3

[neuroticboyfriend]

I wish I knew the words to describe my relationship with verbal communication and speech. I do experience situational speech loss and episodic disorganized thinking. But there's something that permeates my everyday life. I just don't have a normative relationship with speaking.

You will always be able to communicate with me best in writing; it's the most accessible to me. It gives me the time I need to organize my thoughts, allows me to make sure I'm saying what I mean, and. It physically is easier too. There's just something about speaking that's functionally harder for me, and I dont know what it is. I wish I could communicate in writing for everything.

[liongirlofficial]

there don't seem to be many people talking about it even here - does anyone else experience selective/situational mutism? are people just tending to wrap it up with autistic speech difficulty/loss, ""going nonverbal"" etc?

I've really been struggling with communication at uni. this has been a bottleneck in my functionality my whole life but I kind of assumed when I was younger that I would have somehow got over it by now.

it doesn't feel entirely accurate to call myself semiverbal/speaking because in many situations I CAN communicate verbally and my brain generally is very compatible with language. but sometimes that just doesn't matter and I'm just frozen staring like a deer in headlights. it even happens with my husband. it's really scary and feels like I'm behind a wall observing the world but unable to interact with it

I'm realizing I need better strategies for working with this, but I don't know what to do or what will help. I don't have friends or family who deal with it

[pumpkinspicedmochi]

When you're nervous to use aac even though you need it because you don't want to "annoy " anyone or make things "harder" for them

[autispec-hours]

probably one of my least favorite feelings is when i can tell im going into speech loss mode but i’m around people and i’m of course going to force myself to talk even though it feels like hot tar coming up my throat and making everything slow and painful because i have so much anxiety attached to not being heard that i can’t just not speak . i can’t even when i really really need to and it’s infuriating

[dreamygloom]

let me show you another sign I frequently use when I'm temporary unable to speak! +<| :•)