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#actually nonspeaking
clownrecess · 1 year
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It is not inappropriate for AAC users to have acsess to swear words.
My peers started swearing at around age 10, and if that is what language the speaking people of that age are using, nonspeaking people have the same right.
Not giving us acsess to the same type of language as our peers feels alienating, it doesn't let us communicate with the same language and terms our peers and friends do. We are not babies. We are not stupid. We are the same as our speaking peers. Just because you can sometimes control what language we use, doesnt mean you should.
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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.
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birdofmay · 6 months
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Important: If a person on Tumblr says that somebody else writes your posts for you, and wants you to prove that you write everything on your own:
Don't respond. Don't upload a video of you typing or using your AAC device. Block that person, or ask someone to block them for you.
They won't listen to you and you can't convince them. They're just mean. It's spam. Really, just ignore them.
Here's a long post I wrote about that today, in case you're curious:
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riverofelementals · 10 months
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I ask help for months AAC
Primary care doctor therapist occupational therapist every one I can ask
Nobody help
Now happening more more more cannot make grammar right words together only some words hard understand
Maybe could have supported helped regression but nobody cares
So still autistic regression
If like last year (lose words more and more longer longer until no more words and now been 10 months since any words) then probably lose sentence ability full time soon
Maybe have AAC works for me by then maybe not
Maybe no able communicate (not always able nod/shake head yes/no answer - not always think/understand unreliable)
Feel like losing all skills
Nobody cares
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autball · 6 months
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We. Can. Hear. You.
It’s AAC Awareness Month! AAC (Augmentative and Alternative Communication) is more than just high tech devices like the one depicted here. It includes picture books/cards, sign language, writing it down, Spelling to Communicate - basically anything that conveys a message that is not speech. 
And anyone can use it! If you are non-speaking, unreliably speaking, not-yet speaking, or just find words hard sometimes, then AAC is for you. There is no “non-speaking enough” threshold you have to meet - if it makes your life easier, go ahead and use it.
AAC is empowering. People routinely talk about autistic kids and adults like they’re not even in the room, even when they CAN speak. (Which, if you’re someone who does this, STOP IT RIGHT NOW.) This parent could have assured this asshole professional person that her son could understand til they were blue in the face, and they wouldn’t have been believed if he hadn’t been able to communicate it for himself. 
Communication is a right. Don’t let anyone try to discourage AAC on the basis of it hindering speech or “being the easy way out” or whatever other nonsense they come up with. AAC *enhances* communication, and everyone deserves the ability to communicate their needs, tell you their thoughts and feelings, share their hopes and dreams, and tell people to fuck off when needed. 😉
(Image description in Alt Text.)
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meowtismz · 3 months
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Something people NEED understand is.
NO we not WANT an AAC device
NO we not WANT a wherlchair
NO we not WANT use a cane
NO we not WANT any disability aid
We NEED it. Is not a desire is a NECESSITY
Get this inside dumbass brain of you already! Need stop think us disabled people like be disabled just because proud or aware need help.
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tobytalksaac · 3 months
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Reminder that AAC device/mobility aid does not ruin your outfit!
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pixierainbows · 2 months
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Pixie give up . Autism people too angry refuse to stop say “going nonverbal” . refuse to listen … and Pixie just . Can not any more . Crying so much upset so much nobody care at all … just How very very different is to never be able speak … not AT ALL same as losing Mouth words sometimes .
pixie all done being talked over and ignored and yelled at and told go kill pixie self … pixie WISH could just stop exist …
pixie ALL DONE .
from now on . People who miss use actually nonverbal words, Pixie just BLOCK . not care If mean Pixie not welcome in autism community anymore , Pixie never been welcome by community pixie Never welcome by speaking autism people anyway .
is no safe place for Pixie . :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :(
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p1xelpc · 3 months
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Why Life is a Tragedy
[ Plain text: Why Life is a Tragedy ]
My daily routine is usually very empty. Most days it goes like this:
My mother brings me my breakfast at 8. That consists of yogurt with berries and granola, protein shake, and a cup of strawberry milk (a small cup, so I don’t upset my stomach).
She says good morning and helps me rearrange myself if I’m awake. If I’m not, she goes to her office across the hall.
I take about 15 minutes to actually work up the energy to eat and take my meds. I play Wordle while I wait.
If I feel up to it, I go to the bathroom, change my diaper, use hand sanitizer, and wash my face. Some days I may brush my teeth with a toothbrush and water. Those are rare days.
After I finish, I stay in my bathroom chair for 5-10 minutes while I work up the energy to get back to bed.
When I do get back to bed, I decide what activities I will do that day.
If I feel up to it, I set up my activities around my legs so that I can do it when I’m ready. If I don’t, I ask mama if she can set up when she gets the chance.
I play on my phone and socialize on Tumblr and Discord. I try to do my activity.
I do that until lunch. Taking breaks every 5-30 minutes depending on the activity.
Lunch is around 12. It has been hard boiled egg whites, cucumber slices, and a small cheese recently. Soon it may change to a prepackaged lunch with crackers, ham, cheese, and mini cookies. I get another (small) cup of something other than water. 
After I eat, I decide what activity I will do for the rest of the day and try to set it up. I usually do not succeed and need mama to come help.
I play on my phone and socialize on Tumblr and Discord. I try to do my activity.
I do that until mama finishes work. She comes in to take my dirty dishes and she asks what I want for dinner. I want pasta please. She goes to make pasta.
I continue my activity.
She brings me my pasta and another (small) cup of something other than water.
I eat.
I do not do an activity. I may watch TV. I play on my phone and socialize on Tumblr and Discord.
At 8:00 mama comes to help me to the bathroom. After I finish, she comes in to help me wash my hands, wash my face, brush my teeth, and put on my Testosterone gel. We talk the whole time.
I go to bed. Mama helps get me situated. She helps me take my meds.
After mama closes the curtain, I play on my phone until around 10.
I go to sleep.
On weekends my days are different. Mama has to help me shower at least once (usually Sunday). That takes about 1-2 hours total. I need a lot of help.
Some days I have doctor appointments. I take around 45 minutes to get ready. It usually takes 15 minutes to get to the office. The appointments usually last an hour, not including wait time. After I get home, I lay in bed for the rest of the day and do not use the bathroom that night (I am too tired).
I cannot leave the house most days. There are many days I can barely leave my bed. Some days I cannot leave my bed at all. My usual pain level is at minimum a 6. I cannot speak, only make funny sounds. I require at least 2 forearm crutches to walk safely. I usually need a wheelchair to move. I cannot leave the house without my ear defenders on. I take a fully packed backpack everywhere I go. I need support to sit up and to stay sitting.
My hobbies include coloring, playing video games, making disability aid designs, writing, reading, and baking. My favorite animal is a Triceratops, though I only like the cartoonish designs. I like fluffy animals. I love Bluey. I enjoy learning about disability related topics. I read children’s novels because they are what I understand. I love going to the zoo. I love going to the library. I enjoy warm weather with light wind. I enjoy dressing up and doing makeup. I love ice cream cake. On days with nice weather and good health, I like to go outside and just sit. 
I have 2 stuffed animals that I take everywhere (Jameson and Gerald). I have 1 that I take lots of places (Fred). I have 2 that usually stay on my bed, but travel if I’ll be gone for a while (Kougie and Melon). My favorite colors are yellow, pink, and green (no particular order). I use a light Bluey blanket, a light dino blanket, and a weighted blanket every night. I use at least Little Pillow every night (it has smiley faces). I have a cat shaped pillow for my neck. 
Did you decide if my life is worth living? Do you need more information? Do you think I’m tragic? Do you need to give your sympathy to my carer as if I don’t exist? Do you know my sense of humor? Do you know why I am loved? Do you know my limits? Do you know what I am capable of? Do you know what brings me joy? Do you know if I’m a person? Do you know my identity? Do you know who I am?
Do you know if I am happy? 
Do you care? 
This inspired by Unspeakable Conversations by Harriet McBride Johnson
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autisticdreamdrop · 10 months
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nonverbal communication is valid communication
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autistic-af · 2 years
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"The words to tell about your day are all in your head, but you can’t get them out...The feeling of not being able to control your own narrative is crushing."
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clownrecess · 9 months
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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.
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while me post most about nonverbal nonspeaking because intellectual/developmental disabilities, here something about become nonspeaking after/because medical crisis in 2022 & tracheotomy & muscular dystrophy, by alice wong.
overview: “This is a 2-3 minute audio letter to the late David Muir, a disabled man who invented the Passy Muir® Valve, an attachment that enables people with tracheostomies to speak. As a newly nonspeaking person, this letter allows me to share my thoughts on the desire to speak and reflections on silence.”
I paused to consider the phrase “dignity through speech.” There is dignity in silence too. Silence does not mean a person is voiceless, as there are millions of nonspeaking people who use gestures, sign language, writing, technology, and other means to communicate with the world.
I live in a world of silence that is not lesser or devoid of richness. My reality is just different. Silence forces me to be more thoughtful and intentional in considering what I want to say and how I say it when I type into my speech-to-text app, which listeners to this letter are hearing now.
The worlds of speech and silence intersect and overlap. Silence isn’t static or limiting. Silence is not an empty void. Silence has a landscape of its own. Silence has its own dimension, a space that enables another way of thinking and being. There is dignity in all forms of communicating.
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birdofmay · 6 months
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Everyone:
If you get an ask about Facilitated Communication (FC) or Rapid Prompting Method (RPM):
Ignore it!
This person isn't interested in us, they are harmful. And they want to shove their political agenda on us.
Don't respond to their ask, block them!
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itsaspectrumcomic · 2 months
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nonverbal is someone who doesn't talk because they can't, it's an all the time thing so to speak as well. (heheh speak) nonspeaking is the alternative where one can talk normally but isn't able to at the time due to being overwhelmed or something like that. Verbal loss is when you lose the ability to speak, usually I've seen it used in relation to nonspeaking rather than nonverbal. These are all shifting terms tho so it's totally possible they're gonna mean different things in the future or that nonspeaking is merging with nonverbal (which I rly hope it doesn't since it's literally supposed to be it's sort of counterpart, not the same thing) etc etc. These also all happen to various degrees, like nonverbal isn't all or nothing, it's got it's own spectrum so to speak. Same with nonspeaking. I'm not the best at explaining things but I hope this was good
Thank you this is very informative! :)
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autball · 2 months
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When you can’t show what you know, people assume you just don’t know anything.
At least that’s how it works for most autistic kids who can’t speak, or can’t control their bodies as much as they’d like to, or can’t answer things “fast enough,” and so on. Because the people who give the tests really don’t want to entertain the idea that their tests might just be garbage sometimes.
Non-speakers who have gained access to communication later in life all tell a similar story: that they experience a mind-body disconnect that makes it hard for them to control their own bodies. That means that they struggle to perform tasks on command, whether it comes from other people or their own minds, and that their bodies will just do things that the person didn’t even mean to do.
And despite the growing number of people who are able to share these stories, most of the People In ChargeTM are still operating under the assumption that if you can’t answer a question or follow an instruction correctly, it’s because you didn’t understand it.
Which means that kids who can’t show what they know because their bodies won’t cooperate are assumed to just not know anything.
Which means they never get to move to the next level of education.
Which means there are millions of children who languish in educational settings that are not academically challenging enough for them- because the problem they have with their bodies is assumed to be a problem with their mind.
But the inaccessibility of assessments is the problem here. As well as the assumptions people make about those who are thought of as “low functioning.” As well as the fact that the majority of autistic kids who can’t speak are still not given alternative means of communication soon enough, if at all.
We can do better. Presume competence. Treat communication like a basic human NEED and a RIGHT, not an optional privilege to be earned. And believe the people who keep telling us as soon as they can, “It’s our bodies, not our minds!”
NOTE: I’ve been wanting to do something on this for a while, and this particular cartoon came together a couple weeks ago while I was listening to “Ido in Autismland” by Ido Kidar. Please do check it out, along with the work of other non-speakers, to learn more about this experience from the people who actually live it. 
https://www.amazon.com/Ido-Autismland-Climbing-Autisms-Silent/dp/0988324709
https://www.amazon.com/Autistic-Boy-Unruly-Body-Autism/dp/B0B7XF3CVT
https://neuroclastic.com/directory-of-nonspeaker-pages-blogs-media/
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