Kiku should have Kiku's LAMP VI keyguard soon! *happy flaps* this is what it looks like.
wish know how find and talk about things like automatic words , and echolalia , and sing and things but no idea how find or talk .
grow up able sort of speak ( unreliable , lots easy mix up , but technically could ) so think that is impact why still sometimes have those things after regress , when people born nonverbal might not . ( but sometimes some do , person to person different . )
sometimes mouth really do say word , but did not try or expect to , and can not make happen again on purpose . sometimes can sing , but need lots time learn new song . sometimes can recite something short and important .
… and still can not talk day to day , can not talk on purpose , can not make do what want . those things all still unreliable , and easy to lose again . but think there is small advantage that have , when these things possible . ( for example things like call for emergency help , like if can recite name and location )
and just wish have better way talk about .
autistic things 136
people treating you different when you're semi/nonspeaking
Confuse confuse confuse so much people say them nonverbal community say listen nonverbal people say not take nonverbal word but them not actual nonverbal to do posts say mostly nonverbal non speak primary nonverbal non speak can mouth talk some time do some talk words can do mouth words just more easy do aac not mouth words and not understanding doing same else people stealing nonverbal people words all that not actual nonverbal can do mouth words even hard even not all time not nonverbal
"they're faking" I dont care. id rather give help and support and resources to people who dont need them than not give those things to those who do.
Disablity aids are super cool.
You, and your aids look awesome, pretty/handsome/pleasant, and super rad.
I often feel embarrassed for wearing ear defenders, or for having a tablet harnessed around me but like?? That isnt what it is!! It is a disability aid. It is an AAC device. It is how I communicate, and there is no reason to he embarrassed by that.
my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)
transcript: my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)
this written for instagram because of this post. but thought tumblr may like it too. “you” means general you, no one specific.
the instagram post and this on wordpress
this disclaimer is for instagram but also for anyone new to this discussion:
in full honestly, don’t know how to write this. am tired, language and complex ideas too much at time of writing, and general exhaust at having to argue same thing over and over again and justify own existence. tired of being minority within minority, wish there are others to do these work for me so i don’t have to do it all by self, singlehandedly advocate for everyone (not to mention problem with that—i can’t speak for everyone).
so honestly, if you don’t have anything nice to say, especially if you speaking (yes, even if you lose speech. include you), just don't say anything at all. move on.
online actually autistic community (AAut) dominated by white, lower support needs. level 1, speaking, late diagnosed, high masking autistics. find people like you is great, what not great is you treat your very narrow community as “voice of all autistic” and your experience as ultimate autistic experience. i write plenty about that, many more elaborate than this, if you not familiar with this concept.
many people in this community experience times when cannot speak, sometimes because overwhelm, shutdown, dissociate, or anxiety (situational mutism), but do not struggle with act of speaking rest of time (some struggle with speech all the time but still can speak - more on that later). the community call “going nonverbal/nonspeaking,” or even “when i am nonverbal nonspeaking” (not talking about those nonverbal as child and verbal now older), after clinical term “nonverbal” (nonverbal autism) and term coined by apraxic nonspeaking autistics “nonspeaking.”
both of which talk about it as an “all the time” experience.
when i search nonverbal or nonspeaking because i want community too, want see people like me too, two category i see: 1) parents of nonverbal nonspeaking children, whom can’t relate to because age, who can’t write own experience because their age and developmental ability. and 2) overwhelming amount of speaking autistic talk about going nonverbal going nonspeaking.
and the very very few fully nonverbal nonspeaking voices. drowned out. cannot find anyone.
nonverbal used to be term to describe us, people who can’t speak or cannot functionally speak beyond few words. medical term, alright, so some of us don’t like. so some of us reject that and create term all of our own, called nonspeaking. created by nonspeaking autistics with severe apraxia and brain body disconnect, describe their own experience of able to think in words able to spell out words (with great dedication and work and support), just cannot do that with mouth. their term. they create.
and you take it? without knowing context? without reading anything by those same nonspeaking coiners?
when is last time you purposely seek out nonverbal nonspeaking voices? when is last time you accidentally came across us? can you name any nonverbal nonspeaking advocate that talk about their experiences? one? two? three? a BIPOC person, a (specifically) Black person? a Black woman? a trans person? a physically disabled person? a person not from western world?
same narrative over and over. “i can speak for nonverbal autistic i understand their experience because i am autistic i can’t talk sometimes” no you cannot. as someone who was able to speak when young who lose speech (”go nonverbal”) but now have no speech to lose because full time nonverbal. no the experience not the same. not comparable. you gain it back. i don’t. you can explain with mouth words what happen when you get out. i can’t, i only have AAC. countless nonverbal nonspeaking people without AAC or sign cannot, at all. you never experience daily small and big struggle of casually being nonverbal all the time.
your experience of lose speech unique from my nonverbal. but if you so insist to compare and equate, you only guest to my experience, my daily life.
“when i go nonverbal and no one understand so have to force to speak” i cannot force words out. know you don’t mean to say this, and not saying you at fault for this, but nevertheless accidental perpetuate and reinforce idea that anyone who don’t speak can just be forced to speak if try hard enough. but often not how it works. and this exact harmful rhetoric devoid and delays nonverbal nonspeaking people given access to AAC, because “need try to force words out first, AAC unnatural so last resort.”
this may be new concept for you. new concept to instagram, to tiktok. to other places. it may seem i only one with this problem, “i once saw a nonspeaking person’s account and they don’t have problem.”
yeah, because we are not monolith. some nonverbal nonspeaking people don’t care. some nonverbal nonspeaking people may even welcome “go nonverbal nonspeaking” or “when i am nonverbal nonspeaking.”
but don’t be fooled into believe i only one. have many nonverbal/nonspeaking and/or higher support needs friends on tumblr, who talk about this who have been saying this for years. *years*. years before i joined. i am not creator, i only bring message here, because many of us are too high support needs too disabled to do anything else. many of us only stay on our small corner of tumblr because it most peaceful, because at least some listen, because least hostile, because need to defend our experience against our own community the least. (but it happens less doesn’t mean it doesn’t happen, we still exhausted.) many of us only stay on our small corner of tumblr because that all we can handle, or because we not allowed or shouldn’t be on other social media because age or abilities or both.
i cannot handle conflict i do not do well and i shouldn’t be here. but if not me, who else? if i don’t do it, who else is going to?
some nonverbal nonspeaking people and parents of them may question, why you start debate about useless term when so many nonverbal nonspeaking people don’t even have access to communicate, real problems. to that i say i do those work too. and to that i say this is real problem too, because am autistic so online actually autistic community should also be my space too but it not. but it hostile. because am lonely because seeing yourself so crucial because don’t know anyone in person like me don’t have any friends in person like me, so i go online to find people like me and i cannot because no own term to search and what used to be term many people without similar experience insist they understand and can speak for me because they say we have similar experience. because this aloneness and the unique difficulty from being full time nonverbal and the struggle of future and the unique mistreatment from both outside but also inside community have drove me over edge many times and it is presence and knowing their presence of my tumblr nonverbal nonspeaking / higher support needs friends that gave me hope to stay. because so many people don’t listen and instead speak over. terminology only a symptom of problem. address roots, sure, but part of address roots is address symptoms.
‘well nonverbal people are never around” maybe it because you don’t make it welcome for us to join.
“fully nonverbal rare anyway” estimated 30% of us nonverbal nonspeaking, which this statistic probably only count those nonverbal since birth. even more are minimally speaking or without full functional communication, abilities limited to requests. sure, 30% still not majority. but significant amount never the less. speaking lower support needs autistic without intellectual disability not majority anyway too but your experience still deserve heard. ours too.
“see less nonverbal people because they don't have ability to communicate and use social media” yes, many nonverbal nonspeaking people not given access to communication (like AAC), forced to live in silence (because body language communication not enough alone!). silence from birth to teenage years, to adulthood, even until they die. some cannot understand social media or AAC because intellectual disability or cognitive ability. some not allowed on there because safety, some not allowed on because presumed incompetent and abused. all true. do you advocate for them too? or is it just talking point against me, pretend you care?
but not all of us, we exist. some of us thankfully supportive parents all along, parents given resources, us given resources, so we access to AAC since beginning. some of us became nonverbal later in life (which not same experience as those early in life, i acknowledge). some of us after years of forced silence, finally given access to AAC and can now communicate and advocate! some of us on social media - do you listen?
but you see none of us in your community anyway. maybe one token person.
you can go nonverbal. i cannot go verbal. see difference? you can come close to my experience, but i never will have (future) ability to go to yours.
it frustrate that have to specify am nonverbal **all the time** when write this, because if don’t do that will be assumed otherwise. frustrate that when in neurodivergent space stranger see me AAC they assume i can speak because they only know part time users (know part time users frustrate too because people assume they cannot speak and get surprised when they do. me being assumed automatic part time is not fault of part time AAC users.)
even been told am privileged to be nonverbal nonspeaking, privilege over speaking autistic who lose speech because in their mind it mean i get all support i need i get all recognition get all the representation. which. couldn’t be farther from truth.
all that. is fraction of reason i frustrate at “going nonverbal nonspeaking” and “when i was nonverbal nonspeaking.”
so many other words. lose speech. intermittent speech.
just want have own sub community where can find people similar experience.
Eddie sometimes went quiet.
Wayne noticed it after Eddie moved in. He didn't do it as much when he was little and Mary would bring him round, but here he was at ten years old completely silent. When Eddie was little Wayne assumed the boy was just shy, but now that he lived with Eddie he knew that sometimes a whole week would pass with not a peep from the young boy. M
The doctor said it might be a trauma response, might just be something he would do from time to time, either way, Eddie Munson, one of the loudest and dramatic kids Wayne had ever met would still be him, just nonverbal. They worked with a notebook but sometimes Eddie would get frustrated he wasn't being answered fast enough and they were running out of paper.
It was Wayne's buddy from work that presented a solution. "Have you tried sign language? My son was born deaf and Susan and I went to night classes so we could talk to the kid." So that's exactly what Wayne did, he moved his shifts to the day and spent his nights at the school learning to talk to his boy. On his days off he'd show Eddie what he'd learnt and slowly they were able to bridge the gap that the silence presented.
The silent days didn't stop as he grew older, his teachers didn't really understand and sometimes he'd end up in detention with a note saying he was being disrespectful. His friends understood though and enthusiastically asked Eddie to teach them sign language, they'd use it even when Eddie was happily chatting with them, they liked that they shared a 'secret' language from the bullies.
He hadn't had any silent days since Vecna, which Eddie thought was a miracle in itself given the circumstances. However, he woke up a couple months after spring break knowing what kind of day it was going to be. He felt frustrated with himself, he was supposed to be hanging out with Steve and Robin today and was worried with how they'd take it, especially Steve. They'd been dancing around each other's feelings lately and he didn't want to ruin everything before it even started. Resigned he grabbed a notebook and pen and headed to Family Video.
He'd spent ten minutes psyching himself up in the parking lot before heading inside, note written and ready explaining that no it wasn't anything Upside Down related, he just wouldn't be speaking today. The door's bell rings in his ear as he stops suddenly staring at the scene before him. Steve and Robin were, quite rapidly, signing at each other. Steve turns at the bell, smiling at Eddie.
Still in a bit of shock, Eddie signs on instinct, "You know sign?"
Steve has the same look of shock now, before his face breaks into an even bigger smile and signs back, "You know sign! You know sign, how, why?"
His hands are faster than his brain as he explains how he goes quiet sometimes, and Wayne and night classes and Hellfire before asking Steve how he and Robin know sign.
Steve looks bashful as he signs back, "Um, after Starcourt my hearing started to go, so Robin, ever the linguist, insisted we learn, which was actually very smart of her. I can still kinda hear but I get by mainly on lip reading."
Things started to make sense now to Eddie, how sometimes Steve seemed to just nod and smile at whatever the kids were saying, or would need things repeated to him. "Why didn't you tell me?"
"Why didn't you tell me about going nonverbal? Robbie has days like that too."
"Didn't want you to think I was weird."
"I like that you're weird, I like you, Eds."
Eddie blushes at what he interprets is his sign name from Steve, the letter E and the sign for love combined.
"I like you too, Stevie." Eddie signs, the letter S mixed with the sign for heart.
Eddie may still have his silent days, but now he shares them with Steve, and they can sign the things he's not allowed to say out loud, making sure they both know they're loved.
People who are nonverbal are not broken! Nonverbal people deserve to be taken seriously, respected, and included!
Mute people are humans worthy of respect.
Non-speaking people are humans worthy of respect.
Semi-speaking people are humans worthy of respect.
People with disorganized speech are humans worthy of respect.
Deaf people who don't speak are humans worthy of respect.
Autistic, disabled, mentally ill and all of it. We deserve to be treated like and thought of as real people with as much to offer as other humans. The lack of speech doesn't make us "useless" or "stupid" or "like talking to a lamp." Mute people of any kind have just as many thoughts and feelings and actions to offer as those who speak.
Life is still worthwhile and peace and happiness are attainable for us. We will find people who care to make the effort for us to be understood. You will feel yourself breathe softly again some day. You deserve it.
Non-speaking does not equal non-thinking.
They're just as capable of thinking you're an asshole as anyone else, so watch your step. 😉
this is from the last post i reblogged, but here are alternatives to "going nonverbal" or "going nonspeaking:"
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.
visible disability not guarantee help .
severe disability not guarantee help .
people would not " treat better " if more visible , more severe . trust on this .
Edits of an autism creature nonverbal communication image for Quadrant romance
Bonus: Flushed Pity Version
Pixie be AAC device user is not a young child . and . but all AAC device vocabularies exactly same as the for children . no words for relationships and more “adult “ conversations .
have not seen any AAC device vocabulary have words for any “private” body parts . can not tell caregivers about having a problem with some “ private “ body part . no pages for to talk about serious brain “trouble” either .
we people what use AAC devices are very most likely to be hurt by bad people because them people know we can not tell really what happened .
AAC device businesses need to do better. speech pathologists need to do better , and caregivers , and parents , and guardians . all need to do better .
(Tw for a VERY brief mention of infantilization)
I want to talk about interacting with AAC users in person, specifically for speaking people.
1. Being an AAC user, I get left behind during conversations a lot because it takes me longer to add in my statement. By the time I'm done, the topic has oftentimes changed and then what I want to say isnt relevant anymore, and sometimes wont even be understood because to everyone else what I just said was out of place and random. This feels really frustrating and sometimes isolating, as well as embarrassing. Please wait for us, we want to converse too.
2. Sometimes when I am not yet done responding, people will watch me and try to guess what I'm going to say. If all I've got down so far is "I already", people might go "I already.. know!" "I already.. saw!" etc. Please stop doing that. Even if you got the idea correct, you might use the wrong words, which frustrates me. And even if you say it all correctly it's still frustrating, imagine if someone tried to guess what you were saying by interrupting you every time you started to talk. It's annoying.
3. Dont comment on what in our folders. If I open a folder to get to another word, and whilst doing that you see a different word in it that's funny or inappropriate or whatever, keep it to yourself. Its annoying. You have acsess to those words, and it isnt treated as weird, so why is it for me?
4. Don't infantilize us. We aren't perpetually children. We are our age. Treat us as if we are a speaking person of our age.