#situationally nonspeaking

[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.

[buuuuggggggggggg]

Hi yes i have a question for the autistic community

Sometimes, i really hate just the act of talking. It feels unnatural to me. I still can, but it feels very bad and stresses me out. I will then type or just stay silent.

I also struggle with getting certain words out or sentences, best i can describe it is like a broken record, my brain gets stuck on a part of the sentence. (This is not language bound, happens in every language i speak)

I know there's a problem with people appropriating certain terms associated with speaking (semiverbal, nonverbal etc.)

So I'd like to know, are my issues acc valid and how should i express to someone that i have them without appropriating?

(I fully mean well with this post, im just not very well educated pls be kind)

[canis-dies]

oh.

[chaoticbuggybitchboy]

it’s really weird because I’m semi verbal / situationally mute (rarely to an obviously debilitating degree, but it’s still very obvious to me and my close friends) and those people who really only interact with me when I’m nonspeaking tend to assume that I’m also deaf / HoH. Actually the opposite is true I have that super autism hearing. It’s always interesting because I very much want to tell them and be like surprise! I can hear you! But I never do because the whole reason I’m in that situation is because I’m struggling with speaking.

[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.

[clownrecess]

(Tw for ableism, meltdowns, elopement, etc.)

Hi, I am currently in an argument with someone in a comment section because they are saying that autism is not a disability. So I decided that I want to make a post about it, and thoroughly talk about it.

If you do not know me, hello. I am an autistic primarily nonspeaking teenager with mid-high support needs. I'm disabled.

I am honestly very tired of low support needs autistics saying that autism isnt disabling, because it very much is for me and a lot of other people. Just because your experience isnt the same as ours, doesn't cancel out our experience.

I will never live alone. I am a teenager who can not make food, or blow dry his own hair. My ability to use oral speech varies a lot, and when I can use it, I usually end up having severe meltdowns from it. I am in special ed. It hurts when I brush my hair. I have put myself in danger by running into the street. My emotions are extremely strong, so I often seem rude when I'm not, I just can't control the fact that when I feel something it's so incredibly strong that it hurts. I have little to no internal sensation. I could not bathe myself until I was 9 or ten, and even now I will not just go and take a shower myself; I need someone to tell me to, and I need a visual schedule to help me do so. And many more things.

The person's response was to then say that is not because I am autistic, that is because of the way mankind is. That my autism is not disabling, society is. And whilst I do agree that society is horrible to disabled people, and it would be much much easier to exist as a disabled person in this world if society was different, that doesn't change the fact that my autism is disabling. Me being nonspeaking is not because of society. Me being unable to care for myself is not because of society. Most of the things on that list are not because of society!

Just because low support needs people exist, does absolutely not give them the right to speak over us, and tell us what our experiences are or are not.

My autism is disabling. Listen to me. Listen to me. My life has been severely impacted because I am disabled. You can not sit there and tell me that me being unable to care for myself, and unable to live alone ever, isn't disabling, and that it's because of society.

I am disabled. Stop speaking over high support needs autistics.

[clownrecess]

(Tw for a VERY brief mention of infantilization)

I want to talk about interacting with AAC users in person, specifically for speaking people.

1. Being an AAC user, I get left behind during conversations a lot because it takes me longer to add in my statement. By the time I'm done, the topic has oftentimes changed and then what I want to say isnt relevant anymore, and sometimes wont even be understood because to everyone else what I just said was out of place and random. This feels really frustrating and sometimes isolating, as well as embarrassing. Please wait for us, we want to converse too.

2. Sometimes when I am not yet done responding, people will watch me and try to guess what I'm going to say. If all I've got down so far is "I already", people might go "I already.. know!" "I already.. saw!" etc. Please stop doing that. Even if you got the idea correct, you might use the wrong words, which frustrates me. And even if you say it all correctly it's still frustrating, imagine if someone tried to guess what you were saying by interrupting you every time you started to talk. It's annoying.

3. Dont comment on what in our folders. If I open a folder to get to another word, and whilst doing that you see a different word in it that's funny or inappropriate or whatever, keep it to yourself. Its annoying. You have acsess to those words, and it isnt treated as weird, so why is it for me?

4. Don't infantilize us. We aren't perpetually children. We are our age. Treat us as if we are a speaking person of our age.

[clownrecess]

You do not have the right to touch someone's disability aid without asking, whether that aid be a wheelchair or an AAC device.

"It's just a tablet, though." No, it is not. It is my voice. Touching or moving my device without my permission is like touching my mouth without permission, it's weird, gross, invasive, and rude. Stop.

Pushing someone's wheelchair without permission is like picking them up and moving them out of the way eithout permission, its weird, invasive, gross, and weird. Stop.

[clownrecess]

It makes me upset that a lot of the conversation around nonspeaking and/or semispeaking people is run by fully speaking people, or speaking people who loose speech.

Neither have any right in those discussions.

I am partially referring to teachers, SLPs and other people who work with disabled people, but I am also referring to the autistic community online.

"I'm not nonspeaking/nonverbal but I think--"

"I am speaking, but I think that AAC--"

I am sorry, but I don't particularly care too much. If you are going to criticize, or gatekeep anything about AAC or being nonspeaking AS A SPEAKING PERSON, stop.

You are fully welcome to reblog from our community, or to encourage us, etc.

But you absolutely can not criticize or gatekeep anything about our community. You are not a part of this.

I have seen far to many polls lately, made by speaking people, gatekeeping parts of our community. I have also seen speaking people try to criticize, or advocate for the term "nonverbal" (if you are nonverbal, you are more than welcome to use that word! And you are valid! But if you are speaking, do not. Do not.)

Listen to us. LISTEN TO US.

We have thoughts, and opinions. Our voices matter more than anyone's when in the conversation about us.

[clownrecess]

I love you disabled people who are visibly disabled.

I love you disabled people whose disabilities are invisible.

I love you disabled people who can't get diagnosed.

I love you disabled people who don't want to get diagnosed.

I love you nonspeaking disabled people.

I love you disabled people who have highly stigmatized disabilities.

I love you disabled people who are fat.

I love you disabled people with scars.

I love you disabled people who use disability aids.

I love you disabled people who don't use disability aids.

I love you disabled people who cannot live alone.

I love you queer disabled people.

I love you mentally ill disabled people.

I love you disabled people with ableist family.

I love you disabled people with lesser known disabilities.

I love you disabled people.

[clownrecess]

I want to talk about my hand writing, and general fine motor skills.

My hand writing has not changed since I was 9 /srs. And when I was 9, my hand writing was what would be "acceptable" for an 8 year old. I also do not write correctly, because I have a lot of difficulty with writing certain letters in lower case, or upper case, and so my hand writing tends to be all wonky.

Example: "My name is Raymond, I am Queer, and I Find that I OFten haVe a great time expressing my gender with maKeuP.".

Sometimes I write the letters in the correct form, but with the letter "Q" I can not. I always write it upper case.

I also have a hard time with other motor activities, both fine motor skills, and gross motor skills. I can not throw a ball very far. I can not kick a ball very far. It is rare that I catch a ball. I only learned to zip a zipper or button my shirt a year ago. I can not blow dry my own hair. And some more things.

What I find interesting though, is that I am great at typing.

[clownrecess]

(Tw for ableism and lack of autonomy)

I want to talk about the issues with touching somebody's AAC device, and how it feels when people do that to me.

I've spoken about this a bit before, but I have more thoughts on it now that I feel like expressing.

People touch my device a lot, and they very rarely have permission. Whether its because they want to prevent me from moving too far away so they'll grab my devices strap, or they press random buttons, or pull it toward them, or push in my puffy stickers, or to search through my private folder, or something else, people tend to touch my AAC device without my consent. It has gotten to the point that my lockscreen has to say "My communication device functions as a body part, do not touch it without my direct consent." And I have a label on the back of the case that says "COMMUNICATION DEVICE PLEASE DO NOT TOUCH!".

When people do these things it feels extremely invasive, like someone touching your mouth or putting their hands in your throat. Its gross, uncomfortable, scary and weird.

It is also super important to note that a lot of nonspeaking people have sensory issues. You have lotion on your hands? The lotion rubbing off may have just ruined that persons device until cleaned. Also, bacteria is very much a thing.

I have to wipe down my device with sanitary wipes a lot, because I set it on all sorts of surfaces, and lots of people touch it. People who probably have dirty hands.

I personally don't, but some people attach chewies to their AAC device, or bite on the case. That makes the sanitary issues even more intense.

I also stim using tangles a lot, and I also have a ton of anxiety around children touching me or my things. Last school year, a kid at my school touched one of my tangles despite me telling him not to, and then I was unable to use that one for at least a month. My point of bringing that up is just, please don't touch peoples things without permission, especially disability aids.

[clownrecess]

I can not currently, nor will I ever, be able to live alone.

I have mid-high support needs, and they have lately been becoming higher and higher. I can not take care of myself. I can not make myself food. I can not do laundry. I can very rarely take care of my hygienic needs without lots of reminders. When I have meltdowns I am a risk to myself. I have put a small hole in my wall from a meltdown. I have severe sensory issues. I don't think I'll be able to hold most jobs.

I can not currently, nor will I ever, be able to live alone.

This is okay. There is nothing bad, or wrong, or shameful, or childish about this.

Everyone has different support needs, and if you need a caretaker or to live with people as a support, that is okay.

[clownrecess]

Stop treating being nonspeaking like a bad thing, or like something that must be "solved".

I love being nonspeaking. I love using AAC. I love my devices voice. I love adding fun stickers on my devices case. I love stimming with my device. I love customizing the pages on my device. I love making videos and posts about being nonspeaking. I love the color of my devices case.

I love my device, and I love being nonspeaking.

I hope you can love it too one day.

[clownrecess]

I want AAC with more inclusive, and specific voices.

Nonspeaking people need more flamboyant voices. Nonspeaking people need more POC voices. Nonspeaking people need more androgynous voices. Etc.

The best voice I could find for my device was Josh by Accapella, and dont get me wrong, I love it. But, a teenage sounding, androgynous, slightly flamboyant voice?? THAT is what I really really want. Josh was the best for me because it is relatively androgynous, and doesn't give cishet. But, a voice like the one I previously described would make me feel so euphoric, and comfortable with myself.

Can we pleeaaaase make inclusive voices for AAC and TTS in general?

[clownrecess]

(TW functioning labels, ableism, meltdowns, doctors, etc.)

I was diagnosed as autistic when I was 10, and I was more specifically diagnosed with "High functioning autism". The person my psychiatrist saw was me on easy days, on days when I was fully calm, on days when I could easily communicate, and had no other job than to sit and do what she told me to do.

She hadn't seen me go fully mute for months on end, she hadn't seen me fully unable to take care of my basic needs, she hadn't seen me have violent meltdowns, she hadn't seen me hit and bite myself because I couldn't identify my emotions, she hadn't seen me run into the street because I have nothing in my brain telling me not to, she hadn't seen me unable to change clothes for multiple days, she hadn't seen me only able to shower once a week, she hadn't seen me unable to properly exist in gened, she hadn't seen me have severe meltdowns over a change I liked just because I didnt expect it, she hadn't seen me put a small hole in a wall during a meltdown, she hadn't seen me as a full time AAC user, she hadn't seen me as a part time AAC user, she hadn't seen me unable to sleep without an intensely large amount of nightlights, she hadn't seen me unable to bathe myself until age 9 or 10, etc.

She saw me in a calm state, once every few months, on days when I could communicate easily and do what she asked. That is all she saw of me, her asking me questions, having me do things, and asking my mom questions.

If she saw me, and I was the way I described in front of her, my diagnosis would probably be closer to something like "moderate functioning autism".

But here's the thing, ON DIFFERENT DAYS, I FIT DIFFERENT CRITERIA FOR DIFFERENT TYPES OF AUTISM DIAGNOSES.

My ability to "Function" varies so so much, and this makes functioning labels extremely inaccurate.

Now, let's use support needs to describe me. I am a person who's support needs fluctuate from med-high. I have med-high support needs. This is accurate for me, and it is not ableist.

I wanted to talk about this to describe how functioning labels suck, and also to talk about how support needs fluctuate; and that is okay.