#actually nonverbal

[neurodivergent-willow]

[Nonverbal as in FULLY nonverbal, 24/7 unable to speak this is about people like me who 24/7 are nonverbal. Not the same as verbal shutdowns no you dont relate in the same way as me if you have verbal shutdowns]

Something i really hate about being nonverbal is so many of the things i say are documented and ready to be misunderstood by anyone who goes back and reads it

If i use texting to communicate like i text and show it to them,

those texts will be there however their words they said can just disappear and not be documented

With apples live speech accessibility feature they made an update that if you make it speak out loud it will show in a part of recently said things,

i dont use the speak outloud in day to day life but if i facetime someone i do because i don't hear it on my side of the call and so all i said is documented

If i use notes its in recently deleted

In a lot of AAC apps they will have chat history and some have no way to turn it of (chat history is good for some, its not good for me)

If i write down words that writings there what i said is documented

If i am on voice chat playing roblox and typing in roblox chat to reply my words are there on roblox chat documented

If i am on voice chat on discord typing in the chat what i said is documented in the chat

I hate this part of being nonverbal so much

[pixierainbows]

Today last day with caregiver … Them quit caregiver Job .

Have to wait for Company to find new person . and . hope not take long time like months to years . and . hope new caregiver not hurt Pixie .

Not know what happening next week . with no caregiver take care of Pixie .

Pixie so very Tired of this . situation . Again again again . because . Nobody ever stay for long .

Pixie have to wonder if is problem is . Pixie . :(

[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.

[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.

[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 .

[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.

[red--stims]

got bubble tube for christmas. have want for very long time

bubble tube help me lots and is perfect add to my sensory corner

[lifenconcepts]

it should be better known that gifs, emojis, art, and images are as valid of communication as words in text or voice messages!!! Think of it as digital nonverbal communication. The main point is expressed, and it’s your deal to make sense of it.

[arquaticdreamer]

Ambiguous emotional rant:

Being nonspeaking/nonverbal, HSN and homebound anyone with high support needs and complex needs knows just how much autonomous and liberating the internet has to be for those of us who have no other safe place to be our true unapologetic, unadulterated, and authentic weird selves. I am very grateful and appreciative for the internet’s existence that it was ever even created/invented by mankind and that we have the freedom of speech to post (hopefully not all Nonspeakers, AAC users, or HSN disabled people have the freedom of speech to post what they like on the internet sadly) but for those who have good supportive caregivers, and those who have learned how to successfully, and safely access the internet World Wide Web, this is my toast to all of you who have found some semblance of human rights, freedom of speech, creative freedom and expression through your own words, I’m all so happy to be born in the right time in human history to have lived to see this day where hundreds of thousands of autistics, LSN, MSN, HSN, those verbal, semi verbal, minimally verbal, and nonverbal/nonspeaking have a place (so sorry for those who have not found it yet, or might not ever), to post what they like, to the best of their ability. I’m just so very grateful to have made a digital footprint on internet history. I pray we can make the internet a safer more inclusive and accessible accepting environment. Those of us who will most likely never be seen or known for who we truly are online than they see us in real life. Just know that you’re welcome here with me.

Julian & Damian

[radiotransmissionaac]

want share some examples what communicating looks like daily for me with full time aac user nonverbal.

live alone not always talk to people face to face.

during day text friends. Sometimes if low scribal day (not write language good or at all), use emojis, images or aac on phone.

Most time write like see here, but if need ‘professional’ email sometimes can mask good write like how needed. (Blegh ableism)

If parents call, use video chat do Auslan (sign language). Big big lucky, Radio’s parents learn Auslan so talk to Radio.

When go shopping almost always use no tech aac like pointing, facial expressions & much simple Auslan (yes, no, thank you). Carry comm cards with for emergencies. Have different comm cards for how complex feel can use.

When catch train/tram, sometimes need tell driver which stop (because wheelchair.) so write out big letters piece of paper to show. This most easy because drivers not always understand numbers on hands or can hear/see AAC device.

When see friends person, use AAC device either picture board or text to speech, depend on what able which day. Sometimes small phrase can use Auslan while make word shapes with mouth & friends lip read. Or sometimes Auslan gestural so make sense even if not learn language.

If go somewhere alone like cafe use either point to menu or AAC device. If with friends often talk to friends ask order/speak for me. Not all AAC users like this so ask person you’re with first.

Know unique spot be LSN + always nonverbal AAC user so happy answer questions & advice.

[neurodivergent-willow]

"Autism isn't a disability" you tell me as my family are all considered carers for me,

"Autism isn't a disability" you tell me as i receive disability benefits for my autism

"Autism isn't a disability" you tell me as i have special needs so severe i cant even attend school

"Autism isn't a disability" you tell me as i am nonverbal

"Autism isn't a disability" you tell me as i can't regularly dress, bath, do grooming tasks without help or at all

"Autism isn't a disability" you tell me after I've spent months of my life requiring 24/7 1-1 supervision

"Autism isn't a disability" you tell me as i am housebound

"Autism isn't a disability" you tell me as i am officially diagnosed with nothing other than autism.

Maybe autism is a disability, and maybe you just don't want to accept you are disabled because of the stigma around disability? All autistic people are significantly impaired in areas of functioning, even if that makes you uncomfortable, that is the truth. And maybe you should spent 1 minute to go and read the diagnostic criteria for autism. That all autistic people meet.

Autism is a disability, and when you advocate that it's not, you are making real world harm, especially for people with substantial support needs.

They don't give disability services to non disabled people, so please, when your advocacy includes limiting services for those of us who need them the most, is it advocacy or are you just harming people who are already in positions that they can't advocate and be as loud as you.

[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 !

[zebulontheplanet]

Sometimes yes, people with meltdowns do need to be retrained. Sometimes yes, they can seriously hurt themselves. Yes, there is nuance. Restraint can be seriously harmful, but restraint can mean the difference between injuring yourself severely, and someone else hurting you from the restraint.

I’m an autistic person that has violent meltdowns with self injurious behaviors. And yes, this does mean that sometimes I need to be restrained.

I think that in the autism community, there’s a lot of people saying “never restrain!! Never do that!!” And they forget about people like me, who WILL hurt themselves severely if they are not restrained. Does this mean that I allow random people to restrain me during meltdowns? Absolutely fucking not. My caregiver is the ONLY person I trust to restrain me during meltdowns. Why? Because they know how to do it in a way that won’t hurt me, or lead to me hurting them.

I feel like within the autism community, there’s so many people telling us what we can and cannot do. And what our caregivers can and cannot do. YES! Restraint can be life threatening and harmful, but I am prone to hurting myself. To giving myself a head injury, to self harming. It is far more safer for me to be restrained correctly from my caregiver.

Please remember that those of us with higher support needs and more violent meltdowns, do sometimes need to be restrained. However, it’s important to remember anatomy. When my caregiver became my caregiver, that’s one of the first things we talked about, and we came to an agreement and I talked to them about the CORRECT way to restrain me during meltdowns.

Please remember those of us who do need restrained, and please remember those of us that this is the safest option for us.

[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.

[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.