#actually nonverbal

[zebulontheplanet]

Today I watched “Out of my mind”. I have a lot of thoughts, and this opened a whole flood gates of my own experiences. Below will be some spoilers, so don’t read if you don’t want spoilers.

I teared up multiple times during this movie. The girl, Melody, has cerebral palsy, and cannot speak because of it. She is very smart, and has been segregated to a special education classroom that seems to not focus on education. She is smart, and is very good academically, which is seen later in the movie, but no one believes in her. And keep saying she is still “cognitively below average”. This was set in the early 2000s.

Many parts of this film made me almost cry. One scene in particular made me want to ball my eyes out. It was when they were trying to get a AAC device approved for her, and the insurance company did a test on her to “prove she needed it”, and the testing showed that she was “too cognitively below” to get the device, so they denied it. You saw her pain. Her despair, her emotions. It was terrible. I became nonverbal later in life, so my communication access wasn’t denied by those around me. I needed it, so I got it. Because I had already proved myself. Although I couldn’t relate to that experience, I felt a lot of sadness. Because I knew that this was far too common.

Another part that made me want to sob violently, wasn’t any scene in particular, but was multiple scenes. It was the exclusion. I related heavily to this. I have been excluded heavily, but I have especially been excluded within my school. I don’t get invited out. I don’t get asked to sit with people at lunch. I don’t get talked to besides “how’s your day” etc. I am extremely excluded in my school. I’m treated as an anomaly, I’m give fist bumps and high fives like I’m a child. I don’t understand it. I don’t understand why I as an autistic, disabled, nonverbal person have to constantly prove myself. And I think Out Of My Mind helped bring that to light on the big screen.

[river-neurodivergent-willow]

Imagine someone says they "go autistic" every time they get awkward,

and you as an autistic person tell them "hey! You can't go autistic, autism is an identity!"

And they respond with "actually no, social communication disorder is the (SCD) identity!! You actually have SCD and going autistic is the word to describe going awkward!"

That would be really annoying wouldn't it be? Someone using your identity, the word you use to find others like you and to find support which the term autism as ALWAYS described people like you, them trying to change the meaning then telling you, you are actually something else? Really, really annoying.

Apply this situation to people calling verbal shutdowns/temporary speech loss "going nonverbal" then telling nonverbal people who call them out they are actually mute.

ITS REALLY ANNOYING.

[pixierainbows]

wish for smart autism people to STOP saying things like "most autism people actually smart ! ". is not true! is just so erase big part of autism community ! of people like Pixie, and intellectual disability autism people !

STOP say , is not okay ! people like Pixie, people with intellectual disability , are BIG part of autism community ! we deserve be part of own community !

STOP try push out of community, is ableism !

[dakotac0le]

wishing every nonverbal nonspeaking person who struggles with language and how to word things and the pressure of every single social interaction and 'keeping up' or typing / spelling / using pictures / etc "fast enough" is kind to themselves today and everyday. i hope the people you interact with are patient and i hope you are patient with yourself too . its fine to take time. its fine to communicate slower or minimally or not at all .

[stories-by-starlight]

Shout-out this stranger met for while recent, who saw we were AAC user and for whole time:

• made sure we not talked over in conversation

• stopped others from skip over us, and didn’t let them rush us either

• said any words AAC was say wrong verbally for us after we express frustration with that

• didn’t touch our device once or look at screen while using AAC (they were only person who didn’t)

• made sure we comfortable and accommodated whole time was with them

And don’t think any this was even big deal to them. This was first time they even saw AAC, but they still made sure were accommodated for it. Don’t think they realize how much meant to us, and it meant everything to us. To be include and supported so much by total stranger who we would never see again.

Gave us lot hope. Fact that there people like that out there. And wanted put all thoughts that couldn’t put into words when with person here.

Want other AAC users know that there people like that out there, and that there hope.

Edit: Notice this post a lot of people’s first time hear about AAC, want be clear that this person only start say words out loud for us after we made clear that that was something we okay with. Please don’t assume other AAC users want others correct words AAC pronounce different, because many don’t. Every AAC user different person with different preference, please don’t take ours as universal rule.

[five-thousand-loaves-of-bread]

not be able communicate by words means… constantly be misunderstood. misinterpreted. not have any way show own perspective, your side of story. your story always written talked about interpreted read thru other people.

someone did something wrong you. someone hurt you. someone say wrong thing…

someone make up malicious thing about you. maybe that you rude ungrateful bad temper behavior problem. it now become truth it now become you because there no way you correct them.

you can’t educate them. you can’t explain it to them. nevermind that, for example, you severely disabled n having symptoms that impact quality of life, or have symptoms that dare inconvenience people - can only watch as people around you speak “for” you not with your interest in mind but of their own selfishness - that people who can communicate by word say you only do that because you lazy, you selfish, want attention, on purpose, just want to for no reason, faking, inherent personality flaw.

not just big things. more often it those small things that build up every day, happen tens n hundreds of times each day, every day, every week, every month, every year… more often it those small things that add up that break you.

imagine everything bad, incorrect, & bad and incorrect thing said about you in your life. n now imagine you not able defend yourself, explain yourself, or even say those wrong not true.

n any attempt of yours to maybe protest, not enough, people not understand, or downright not listened to, made fun of. at first you shake head make noise meaning no all calm. after while of it not work you get frustrate n it start showing. you get impatient n snappy, why none of you understand, is any of you even trying. but people around you with privilege of able communicate n defend self thus never have experience of not have that, find it such basic of skill that they no longer see it as acquired skill but instead see as innate, born in, natural, cannot imagine person not have it just like can’t imagine living person not breathing—they only see their perspective n only see their interaction n not the many, hundreds n thousands, of previous communication where no one understood you (or even tried to). so they mock you (sometimes they the one who on purpose provoke you to see your reaction like you monkey in cage for their entertainment), geez big reaction why can’t you be patient. n you get label, impatient, rude, explosive, anger issues.

you protest in only way you can without words. you do it by sounds n noises n movement. you raise voice you scream you smash thing around you you hit yourself in frustration you hit other people who don’t understand you because you frustrated at their incompetence n how much they failing you. because. show me another way person can communicate without words. show me way that one can continue do after tens n thousands of misinterpretations n miscommunications n malicious interactions, n still remain calmly, “appropriately.”

you communicate in only way you can with only emotion you can feel at this point: anger, frustration, helpless. be misunderstood, even smallest innocent one, become trauma become trigger. miscommunication alone can set it off, make you see red n see billion of previous miscommunication where everyone failed you n left you to fend for self. then the backhanded jab that sometimes follow, that make thing exponentially worse.

you communicate in only way you can with only emotion left you can feel that consume you. loud sounds, screaming, get physical. it not earn you be understood. it only earn you this: be called impatient, irrational, explosive, land mine, rude, ungrateful, annoying…

“behavior issues.”

and that’s another misinterpretation of you you can’t defend yourself against. cycle repeats.

n other verbal people only listen to other verbal people. so these descriptions of you become “your truths”.

n the true you left there. to rot.

a lot people with no functional communication (either because no ability, or because circumstances) labeled as have behavior issues. yeah, no fucking shit. try it for a while. anyone would “have behavioral issues” in these circumstances.

no one seem to care. so okay fuck yeah am difficult kid, have behavioral issues, make your life miserable. yeah am terrible person, have inherent personality flaw of no fault but my own. except now do it on purpose, make it true now, put ability to control own truth in own hand. because you all seem want me be that so bad. so now you get it. don’t complain now, you all asked for it really really nicely.

but deep down. at most basic. hidden beneath. really just. want be understood. want be helped. want people to learn my communication.

“many behavior is communication” yes, those kind of behaviors should be respected n valued n listened, but try behavior your way out of correcting n explaining everything just said in post to person who just don’t seem to get it

without rely on good grace of nice people around you who keep on play guess games n give out guesses in words you can nod or shake head to. now, that’s cheating.

people not nice to people who *have no choice* but to *only* rely on behaviors & vocal noises to communicate

n, even if every single person nice. behaviors n vocal noises alone, not enough.

this written with full time experience in mind

[clownrecess]

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.

[ieatratsforbreakfast]

Because is AAC awareness month, and most conversations center autistic AAC user, want to say happy AAC awareness month to:

people who use because of severe fatigue

people who use because of TBI/brain damage

people who use because they are recovering from stroke

people who use because they just not like talking

people who use because of throat pain/pain in vocal cords

people who use because of other neurodivergence than autism

people who use because of apraxia

people who use because of I/DD

people who use because like it better than verbal communication

AAC awareness month celebrates everyone who use AAC, for any reason.

[nonspeakers-r-us]

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. Anyways. 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.

[zebulontheplanet]

I don’t think people understand how it is to have been behind on EVERY milestone. Learning how to walk? Late. Learning to read? Late. Learning to use the bathroom independently? Late. Every single milestone was late.

And when you have this, people ask questions. People bully you. Why can’t you shower by yourself at 9,10,15,20? Why can’t you brush your teeth independently and frequently? Why can’t you tie your shoes? Why can’t you do math? Why can’t you do this, or that.

And then there’s the people on social media. “Well I was forced to.” “Well I didn’t have a choice” and that’s understandable and completely valid, but there are people that no matter how much you force them, or neglect them so they “figure it out” they won’t “figure it out”. They’ll die. They’ll starve. They’ll not bathe and be dirty.

Higher support needs people don’t just “figure it out” our brains are wired differently. Our brains don’t get that we HAVE to do these things just to survive. So we don’t. And that sucks.

It’s disheartening to constantly hear people say “well i was forced to” because so was I!! I was forced to do things too! I was neglected too! And guess what? I still didn’t do those things. I STILL wasn’t able to meet those milestones.

The big one that I see is “well I’m forced to talk.” And I get that, but me, a person that’s nonverbal, can’t be forced to talk. No matter if I’m neglected, no matter if my device is taken away or I have no way of communication. I still wouldn’t be able to talk. I CANNOT force myself to talk. Get that through your heads. This is my reality, and although yours sucked there are still some people who cannot do things, and saying that they could if they were “forced” is invalidating of them.

[river-neurodivergent-willow]

You are not helping the nonverbal community when you insist that that nonverbal people are more socially acceptable in some ways to try and highlight our worthiness

"Nonverbal people are speaking, by using AAC devices, but you're just not listening" what about the nonverbal people who don't have the skills to use AAC?

"Nonverbal, not non thinking!" What about the nonverbal people who don't understand language and don't think in language?

"Nonverbal people are more likely to be a high IQ!!!!" "Nonverbal does not mean intellectual disability!!!" And the nonverbal people with intellectual disability?

Stop trying to make our community sound more palatable it harms and ignores those who are the most vunrible in our community. It is okay to be disabled, it is okay to not be perfect at everything that doesn't mean we are any less human or worthy!!

[pixierainbows]

Pixie lost a question tumblr post and not sure exactly what was ask . took Pixie so so long time to answer . Weeks of work … So here is answer with no question . so sorry !

A few things about being actually nonverbal ( Never able use mouth words at all , ever … “going nonverbal” is NOT A THING ) .

1- AAC Very slow compare to mouth words . Can take Pixie 10 or more minutes just to give answer to “ hello how are you ?“ Longer word things , like simple blog post , can take weeks to months . people are never that patient , even otherwise good people can just not wait , not without practice .

2- being nonverbal , needing AAC to Communicate all the time , make many things much harder or not possible at all , even with help .

example -

Most medical professionals Pixie have known will not accept communication with AAC device As genuine communication . And ! also will not accept communication from someone else , what is not biological parent , unless AAC user verbally ( not with AAC device ) give permission . Or . personally fills out in writing many forms giving permission . Even then . Is not work every time .

is Same for many many other things . banks and government agencies and schools and businesses and organizations of all sorts .

3- Geting emergency services like ambulance or Police or Firefighter services require speaking . so , need someone else help by calling .

4- many programs for disabled people will not allow access to programs if person cannot *speak* independently . ( Pixie lucky have found some good programs , in big city really help have more programs to choose from )

Pixie also have cognitive disability and moderate to severe language difficulties . but ! even people what just not can speak And not have anything else disabling ( unlike Pixie ) Still need so much more help just because of not able speak ever .

[dakotac0le]

"i wish i was nonverbal :((( itd be so much easier if i just didnt talk :((" SO THEN BE NONVERBAL !! JUST STOP TALKING !!!

oh. whats that? u cant ? or u would but ppl r always being rude or making a big deal out of it or wont leave u alone or u dont have access to aac or aac is slower than speech or ppl make weird assumptions about u or-

so then u dont want to be nonverbal. u dont want to deal with what it is actually like to be nonverbal and everything negative that comes with it.

u want to have a choice not to speak, u want oral speech to not be seen as superior so you can communicate comfortably, u want better aac or better access to aac. and thats perfectly reasonable and good actually !! i want that too. but thats not the same thing as being nonverbal. so please dear god stop phrasing it like that.

[stories-by-starlight]

While cruel and intentional ableism is most scary to us, there something unique painful about ableism from people trying be kind. Because they don’t even know, they can’t see it.

The cruelty, slurs, and pain from ableists looking to hurt scare us, but it’s words of kind well-meaning woman who told us “It’s ok, God failed you first because he made mistake making you” that stick with us most. Because just…can’t see how cruel that is say to someone. They can’t see cruelty in words or actions, this is them being nice. And that scary, because reminded us we so so far from being seen as person.

[five-thousand-loaves-of-bread]

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.

[clownrecess]

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.