#actually nonverbal

[zebulontheplanet]

I get so frustrated when talking about the fact I’m nonverbal and people go “well you type good so you’re fine” and that makes me so frustrated because like…typing doesn’t replace the fact I can’t speak! It doesn’t replace the fact that I’ve had hours upon hours of intensive therapies to get me to type the way I can, to express myself the way I can. And some were emotionally damaging. That doesn’t go away.

It doesn’t take away the ableism I face. Or the fact that if im trying to communicate with someone, our disabilities could collide and make it difficult to communicate. It doesn’t change that. And it doesn’t change the continued regression I am going through. It doesn’t change any of that! It doesn’t change that I’m constantly frustrated because my device is so slow compared to my thoughts. Or that other people find it very slow and get annoyed with me.

It’s honestly frustrating when people say this, because although I’m privileged to be able to type in the first place, that doesn’t change the ableism, frustrations, and therapies that I’ve gone through. I’m not “just fine” I’m constantly struggling to try and adapt to a situation and world that wasn’t meant for me. That is continuously ableist.

Im privileged, but that doesn’t mean I still don’t struggle.

[the-firefly-system1]

Also this autism acceptance and awareness month please stop using the term going Nonverbal or going nonspeaking when you are having a temporary loss of speech. Use a term like verbal shutdown or speech loss episode instead. As a Nonverbal autistic I am tired of speaking people using the term Nonverbal or nonspeaking to describe their verbal shutdowns

[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 !

[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.

[meowtismz]

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.

[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.

[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.

[birdofmay]

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:

[perplexingluciddreams]

sometimes i live so much inside my own head that i forget i am actually nonverbal on the outside of me

of course nonverbal affects the inside of my brain too, but i am used to that because i live in there always

there is just no need to out-loud talk inside the brain, so it doesn't occur to me! until someone is physically near me and i am thinking something and i think it loud and still they don't respond... why??

...oh. they don't live in the inside of my brain like me!

only then do i remember; i can't actually just tell them with out-loud talking words, and i either scramble for another way to say it, or just give up 🤷🏻‍♂️

it can be quite funny sometimes though, if i take a while to get to the realisation that they can't know what i am thinking inside my own brain 😂🤣

[stories-by-starlight]

Don’t love AAC. Feel frustrated by it lots times, feel overwhelmed and confused by it lots times. Feel unwanted because of it lots times.

But want to believe will learn to love it. Will move past the scary and the confusing. And will feel comfort by it one day. Will feel familiar with and seen by it.

And even if never do. Even if AAC never becomes a friend. It is there. It will be there when want communicate with world outside, and will be there when thoughts can’t stay inside.

Have complicated relationship with AAC, and am okay with that. Think will be okay.

[zebulontheplanet]

How I do the pharmacy is really interesting. It’s really one of the only medical places l can do really independently. My parents sit in the car and sometimes my sister comes in with me if I really need it, but the pharmacists know me and are really helpful and try and make it as independent for me as possible.

I go in, and proloquo4text has the option of enlarging my text. I usually do it on my phone because it’s easier than the large tablet I carry around! So I put down my name and date of birth and hand them my phone. They take my phone, put in my name and date of birth into the system. They pull up my name and give me my meds. I’ve never had an issue. My medication is always sorted out and everything, sometimes it’s messed up a little? But then my mom calls and gets it figured out.

They give me my medication and that’s that! I pay with my parents card if there’s any co-pays and I go on with my day. It’s super easy and I can do it independently! My mom looks over what I got and that’s it!

It’s just a really unique experience and very easy for me. I love how the people around me make things as easy as possible for me and try and make it smooth for me.

[the-firefly-system1]

Happy autism awareness/acceptance month! I think that it should still be called awareness and acceptance because a lot of people even a lot of low support needs autistics don't understand those of us that are higher support so please listen and learn about those of us that are high support needs, medium support needs, Nonverbal/nonspeaking, semiverbal/semispeaking, aggressive, visibly autistic, low or non masking, and intellectually disabled

[pixierainbows]

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 . :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :(

[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.

[meowtismz]

"Me care about support disabled people always ever" Ok but do support...?

... Low words autistic people?

... Addicts?

... Low/no/hyper empathy?

... Younger people cane users?

... People complain about pain lots?

And any people not fit "ideal disabled person" concept that YOU create???

[five-thousand-loaves-of-bread]

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.