#nonverbal autism

[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.

[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 . :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :( :(

[spectrumgarden]

It's okay to like picture based AAC more than Text to Speech even if you can type. Maybe it takes you longer to make a sentence than with regular typing but that's okay too. Communication should be as easy and stress free for you as possible, even if that takes more time.

[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 😂🤣

[ichverdurstehier]

So I'm writing an autistic character who's currently having a speech loss episode due to extreme trauma (trust me you don't want to know) how should I describe the noises he's making and his attempts at communicating? There's no AAC devices bc they haven't been invented yet. Nonverbal autistics and semiverbal autistics of Tumblr, what sounds do you make when you're trying to communicate but your mouth doesn't work? My strain of autism doesn't involve speech loss so I cannot use my own experiences

[nonspeakingkiku]

Kiku has been thinking about skill regression recently. For a while Kiku hadn't been able to place when it had happened outside of Kiku's speech. But recently Kiku realised that it happens to Kiku sometimes, usually after a bad night (couldn't sleep, nightmares, ect.) or after really bad meltdowns.

It usually but not always follows this pattern for Kiku: Has bad night or meltdowns, can't make any noises or making noises is very hard, and Kiku has to figure out how to make sounds again. And sometimes lose sounds for a long time (think longest time with little to no sounds was two weeks).

But sometimes it's not sounds, sometimes it's tasks Kiku has done lots of times. With those it's less like Kiku can't remember the steps to do the things(although the steps often get scrambled and out of order), and more like Kiku can't remember how to move to do the thing. This ended up with Kiku usually asking partners how to do the thing, which partners usually respond with "Like you always do" (which is understandable because these are things Kiku do a lot). But Kiku didn't know why this was happening until recently.

And sometimes it happens suddenly.

When it happens suddenly it usually doesn't last long (or I get distracted and don't think about it for a while. This often happens when stimming. Kiku will be stimming and then body will do something else and then the stim was doing before is just gone, don't know to do it again or even what it was.

Anytime lose a skill it's really scary and don't know when or if the skills will come back. The most recent time this happened Kiku lost a sound for like a week and only recently got it back.

Kiku is trying to find resources on autism regression, especially resources that aren't toddler focused.

But if other autistics who have experience skill regression or late autism regression want to share this post with their experiences maybe we can make our own resource.

[tobytalksaac]

Hi!

Toby uses xe/xem pronouns. Toby is full time AAC user Toby likes stuffed animals and dogs Toby has lot support needs Toby is alter! Toby sensory seeking, likes soft texture, sweet taste, and tapping sound. Toby system anti endo, toby endo neutrul. Endo can interact! Just no other accounts please.

Toby's DNI! Israel supporter, radqueer, TERF, people who infantilize high support need.

[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]

hi . this is our first post using aac !

[pixierainbows]

Pixie have forgot just how many people Pixie had to block for using "going nonverbal " …

more than 10 this week for sure. . . is so frustrating. just want to find other actually nonverbal or semiverbal people …

but instead . all the nonverbal tags on tumblr full of mouth talkers, people who can talk .

is is not okay is taking away tumblr is one of very few websites that be accessible to nonverbal AAC user pixie .

but especially recently is getting so much more hostile to people like Pixie . what are "too retarded ", an embarrassment to more “ normal “ people

people what try rejecting people what are visible autism, or cognitive and intellectual disabilities .

do anybody know Internet places like tumblr but . less judgemental … more respectful . ??

Pixie wish people be kinder, but do not think will ever happen on tumblr .

but . . . Pixie have no idea where else could go . not know of any place . where being nonverbal and high support needs /low functioning be actually welcome .

pixie very very sad … thinking of leaving tumblr … if only people be kinder like before . but no longer is tumblr safe place for people what are more severely disabled , like Pixie .

sorry for all the bad bad sentences hope is can still read and understand what Pixie try saying

[unholy-plague]

nonspeaking/nonverbal autistics i have a question!!

if i have some alters who are unable to speak/speak very minimally, is it okay to call them nonverbal/speaking or semiverbal/speaking? i know there's been a push not to use nonverbal correctly but does that also include not calling specific alters nonverbal in an otherwise fully verbal body?

[calibabii21]

so my nephew has nonverbal autism (he'll be 4 in December🥹🥹) and the more he learned things like sign language, dances to the interactive videos he watches, how to count, where body parts are etc etc- my heart simultaneously swells and constricts, he's doing so well, but not a lot of people (family) recognize that.

while, yes, some things are just him being a bad little toddler, there are moments when he's genuinely trying to communicate or make a connection and my dad just doesn't have the patience to learn and assist him. his methods are the ones he used with us- discipline them until they get it.

he always says "y'all didn't do that with us"- that's literally because we had fear instilled in us. he doesn't realize that shouting at children is just as harmful as physical or sexual abuse. he literally flaunts it and everyone (again. family) literally makes me feel like shit and like I'M being dramatic and mean to my dad any time I use the word "trauma" when it comes to my dad's anger outbursts. apparently I need to "get over it and let it go" because "that's just him" and I'm "hurting his feelings".

anyway, my point for this is I'm proud of my little guy and he's so so smart. he is an annoying and caring big brother already too😭I pray my family is able to show him more gentle love where he needs it and not just me☹

[perplexingluciddreams]

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.

[ichverdurstehier]

Nonverbal autistics of Tumblr, why do you guys use third person language so often? It seems to be a very common thing