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
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.
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 .
Nobody talks about episodes of uncontrollable emotion and dangerous behaviors in severe Autism.
I apologize for the long post. This is important to me.
Heavy CW for mention of knives, self-injurious behaviors, description of intense emotions, brief descriptions of restraints and police.
Yes, I used the word "severe" to describe my Autism. This is because I am Nonspeaking, very High Support Needs, visibly Autistic, and have a Borderline IDD. This is how I choose to describe my Autism. Please don't attack me for this, Tumblr.
Darting out into busy streets. Repeatedly banging your head against walls. Throwing objects, sometimes even very dangerous objects such as knives. Breaking things - anything - no matter the value or durability. Unplanned, sudden violence towards self and others. Lashing out, in pure emotion, just screaming into nothing at the top of your lungs, for no obvious reason other than pure, unadulterated, terrifying emotion.
This may not seem like symptoms of Autism for anyone, and they may not be caused by Autism at all. But for many young people and adults with severe Autism, this is what our families deal with regularly. "Difficult behaviors", as I've often heard them described as by social workers. There's often no clear reason for then. They just. Happen.
We are almost never diagnosed with secondary conditions. It is considered a symptom of our severe/profound Autism. While in many Speaking and Low Support Needs people with Autism, they would be diagnosed with various conditions.
Conduct Disorder. Bipolar. Borderline Personality Disorder. Maybe even a severe case of Intermittent Explosive Disorder.
But for those of us on the more visible part of the Spectrum, nobody knows how to deal with us. It's scary and heartbreaking for our families, and deeply traumatic for us. Many times, our families and caregivers will turn to emergency services such as police or EMTs when they have no where else to turn. I don't like this option, I hate it. But in moments of extreme panic and fear, I don't always blame families for this.
Nobody talks about those of us who have been restrained by our arms and ankles to hospital beds for weeks at a time. Nobody talk about those of us who turn violent on the people we love most, when we just can't control ourselves.
I wish I had good advice for those of us struggling with this. I wish I could comfort you. While mood stabilizers and antipsychotic medications have helped me, it doesn't help everyone. DBT for severely Autistic individuals is another thing that greatly helped me.
This is a fact of life for many individuals with severe Autism and their families. It's terrifying. But please keep trying treatment, keep advocating for yourself as much as possible, and keep going. I'm sure you don't think this means anything, but you are strong. You are brave. I see you and I want you to keep going.
Nobody talks about episodes of uncontrollable emotion and dangerous behaviors in severe Autism.
I'm nonverbal and I don't like it when speaking people say nonverbal/nonspeaking to describe themselves.
Reblog if you're nonverbal/nonspeaking or minimally speaking and don't like it when speaking people say nonverbal/nonspeaking to describe themselves.
I want to show that it's a majority thing.
Tagging the first people I can think of to show them this post:
@perplexingluciddreams @five-thousand-loaves-of-bread @plural-autism @lunabrainbad @gwydion-aacblog
To speaking people: Keep in mind that many nonspeaking people aren't on any social media, so even 10 reblogs are a lot - we are a minority on here.
A “brief” overview of my communication journey:
My verbal communication was always limited to echolalia and scripts (by scripts, I mean pieces of different echolalia that I stuck together to create a new phrase, or longer several-sentence delayed echolalia. But I didn’t learn to do this until I was at least 9 years old). I also had very limited control over what my mouth said - I would regularly hear my mouth say something I completely disagreed with, then had to watch in panic and confusion as the people around me reacted as if it was something I actually thought.
I used to request things that I didn't even want. "I want..." statements were banned in my house because they were "rude". “I want never gets!” I had stuck as a script for the longest time, even involuntarily saying it when other children said an “I want…” phrase.
I was given examples of how to request things by my parents. I used "I would like...", "Can I have... please", etc. But this didn't give me a reliable way to ask for what I wanted - I could only ask for things I had a script for. So I was limited to a handful of foods and objects that as I grew older, I had less and less interest in.
Saying "please" and "thank you" was drilled into me so much that I would often say it at the end of other unrelated scripts because it got "stuck" there by my mouth, without my permission. I got laughed at for this a lot.
I would say "yes" when I meant no, I couldn't reject things because I didn't have a script for saying "no". And I had been told to be polite so many times that it was a concrete rule in my mind - breaking a rule was worse than anything else. Saying "no" was rude, according to the adults around me - if another child said "no" to something, they were told off by a teacher or their parent. I didn't understand tone of voice so I thought it was the thing they were saying that was wrong.
As I got older, and became more aware that other people seemed to have more control over their voices and could say what they wanted (my general awareness of people and my surroundings definitely played into my struggles with communication, but I won’t elaborate on that here) I would sometimes sit in my bedroom and attempt to read aloud from a book, or write a sentence and read it aloud. To my confusion and upset, it would come out garbled with sounds mixed up, words missing, sometimes no sound coming out of my mouth at all. I couldn't make intelligible speech with my own words AT ALL.
I managed to teach myself to manually make some sounds, mostly vowel sounds, by moving my tongue around whilst making sounds with my vocal cords. But clearly this was not enough for using spontaneous speech as communication. Not to mention, any time I even considered trying to get my OWN words out (with speech, writing - even drawing pictures, signs), all words and scripts I knew just disappeared from my mind.
The only time I could even slightly get my emotions out was through movement - I used to throw myself backwards onto my bed repeatedly, bang my head with my hand, pull my hair, spin around in circles. I now know these would be called "stimming", but at the time I used it more for expressing myself. I also had other repetitive movements that I did almost constantly without even realising what I was doing, but I considered the expressive movement to be a different thing entirely at the time.
It took me years to get my own words out, and that was only once I managed to break down (spoken AND written, and both connected) language into individual words and learn the meanings, then learn to build it back up again. (And, this could only happen after I’d lost most of my out-of-control scripted speech. AAC with symbols helped me break down language in this way, because each word has a separate button and I was forced to learn to form sentences without an already-there structure to fall back on).
In order to do this, first I must take the long string of noises, and break it down into words. Then I must take those words and process the meaning of them individually. The biggest challenge, and the thing that takes the most time, is building the sentence back up.
Words often change meaning when they're strung together, and this is the part where that meaning tends to disintegrate into nothing, for me.
I have to build an abstract "picture" of what the words mean in my head. With very complex language, or a lot of language at once, this can take me hours, days, or even weeks.
Written language is a lot easier to process - firstly, the "string of noises" part is completely eliminated from the equation. Secondly, I see written words as entire shapes. Shapes, symbols or signs connect much more strongly to their meaning, in my head.
I learned to write by hand before I could type, because writing by hand is just copying the shape of a word. I hadn't yet learned to break down a word into it's individual characters and sequence them in the right order, not to mention finding the letters on the keyboard. My spelling has always been fantastic because of my tactile memory for words - and I say tactile instead of visual, because I don't "see" anything in my head, but the shapes of words are something solid that I feel I can touch, hold, grab on to.
But typing was a completely different thing, because even though I could recognise and read words in a typed print, it took longer for me to understand how to put letters together in the correct order to create words using a keyboard. The motor plan for typing was much more difficult for me to learn, but now I have that skill it's invaluable to me in terms of communication.
It took me a little while longer to realise that a keyboard gave me the opportunity to use my own words from my own mind, rather than whatever my mouth (or brain, when writing - I had different written scripts than verbal scripts, though, usually from books) happened to blurt out without my control.
I learned to read very early, but my understanding of language was actually quite poor - separately I could recognise the definition of one word, but when many words are put together I didn't understand the meaning of that sentence or paragraph.
The feeling of being able to put my own thoughts into written words like this, and read them back, is such a rush of power. I can have a concrete, physical impact on the world now that I can use a keyboard and get all the things in my head out there. It becomes real as soon as it's outside of me.
I remember that "comprehension" (answering questions on a written passage - we learned to answer the questions in a certain way, with a “blueprint”) in school really helped me with the breaking down of sentences and rephrasing them. Even though at the time, it just felt like it added to my out-of-control scripted speech, it gave me a skill that has been incredibly useful to me in the long term.
Getting to this point, where I can express myself fluently and eloquently through written language, took so much time and work, and still takes all my energy to write something as long as this. I am so grateful for the genuine communication I have now. It took many sessions, over months, to write this in its entirety. I wrote it in separate chunks, all trying to express similar things, then fitted them together and altered some sentences to make it flow better. (Of course with lots of editing to fix my grammar and my tendency to repeat the same sentence structure over and over - I still use my “blueprints” while writing, it’s the only way I can form complex long sentences like this one).
In order to communicate a memory or past experience in words, I had to have been actively translating (or attempting to translate) my abstract thoughts into language at the time.
If I wasn't or couldn't do this at the time it was happening, those experiences, thoughts, emotions, etc. are almost impossible to describe in language now.
And translating my brain takes so much energy and effort, and relies on me being able to understand what is happening and what I'm thinking and feeling. I more often than not don't comprehend my own mind - if this is the case, then of course I can't explain it to someone else.
It still takes so much time, effort and energy to get my thoughts out like this, and I’m very proud of the progress I’ve made. Even just learning to use Tumblr and posting on here as regularly as I can manage (plus reading other people’s words about similar experiences, or even very different experiences), has increased my ability to express myself and the vocabulary I’m able to access.
I'm tired. I'm tired of being treated like a doll or house plant on a shelf because I can't talk. I'm tired of no one understanding my BSL, of no one listening to me.
I AM A HUMAN!
I have words to say, thoughts to express, feelings, a fully functioning consciousness! I deserve respect too!
When I sign at strangers they just stare at me with this dumbfounded look, empty nonunderstanding eyes. When I need help they ignore me, don't even offer a pen & paper, force me to play charades with them only for them to misinterpret it!
Do they not know how lonely it is? When everyone else in the room is chatting, laughing, shouting, and I sit there not able to utter a word? How isolating it is for no one in your life to try to learn sign for you?
This world and its cruelty, people and their negligence, this crushing ache to be understood...
If you are abled, if you are hearing, if you are speaking, I'm begging you to learn some basic sign. You have no idea the pain and fear of not being able to communicate. If you know even just your country's sign alphabet, you could literally be someone's lifeline in situations like this. Enough with the abled saviour act, get out there and actually be one.
new HCs just dropped hang on
Ben (descendants) and Lloyd (Ninjago) are both nonverbal and fucking HATES it like these two fuckers will force themselves to talk anyways. They're both supposed to lead people in one way or another, how are they supposed to do that without their voice?? unimaginable, they'll do anything to still speak out loud and never let anyone know
Merlin (BBC merlin) is also nonverbal, but he's fully accepted and is completely okay with it. Sometimes words are just hard and that's okay, there's nothing wrong with that and whenever it happens you just gotta vibe with it or find other ways to communicate
I thought my go to AAC app didn't work anymore (it put out weird glitchy noises instead of. words.) but i just had to change the speech engine I'm so fucking relieved <33
Im finally making a custom AAC board on coughdrop
its going pretty well so far, which is surprising tbh
im planning on sharing it when I'm done
though some of the folders will be very specific and personal to us so keep that in mind. For example, we're making a stimming folder (we like to stim with our AAC) so we're only going to put words that we personally stim with. We're also probably going to have folders for our specific disabilities (like PoTS, OSDD-1B, etc.) and our specific Hyperfixations and special interests
Tay say thing own autism people ignore ignore say wrong wrong but smart writing person say same thing all all listen share that say important words makes sad sad sad just because severe autism intellectual disability make hard understanding not mean words not important
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.
don’t think many people realize that. like. even AAC user who have most control over motor skill, who type fastest, who have no other cognitive symptom that make hard think, no other communication issue, still communicate a lot slower than average speaking person.
and AAC users who are like that. very very rare.
AAC. even if type very very fast. still slower than average speech. or at least less spontaneous, more intentional, more purposeful, very rarely can do equivalent of “say whatever think without plan ahead, speak fast than think, speak without think.”
so AAC disadvantage when during emergency, urgent times. or even just time sensitive situation. for example one hour doctor appointment, on very good motor day and i type both hands fast (rare), still probably only get at most half of what average speaking person amount say.
and even then. able give less detail, short sentence short phrase, because long full detail take so much long.
mouth talkers be taking over the nonverbal tags again so frustrated just not okay :( :( :(
speaking people really be pushing actually nonverbal people out of own spaces again again again so not fair Not Fair NOT FAIR
quick question to those who have nonverbal episodes; mine are often stress or trauma-related and i had one that lasted a few hours today, in the middle of class (very inconvenient) and that's the first time it's gone for so long during school. how do you guys deal with that? does anyone have any tips on how to deal with it? thank you ^^