#part-time AAC User

[us-being-us2]

AAC Struggles

I just wrote my AAC device company to see what support they can give me, but I thought I'd take my struggles to the community for advice, too. I struggle to be concise and to organize my thoughts, to bear with me.

I have Level 2 Autism (I find diagnostic levels helpful, it's okay if they're not for you, and I'll never use them for anyone else unless asked to by the person with the diagnosis. I also support self-diagnosis/-identification), and expressive-receptive communication disorder, and self-diagnosed selective mutism. I consider myself an unreliable communicator. I am a part-time AAC user, but I want to use it to support myself more than I currently do; I often just don't communicate in situations where I have needs or thoughts. I was able to get AAC after not having support due to childhood circumstances that don't reflect on my support needs about 5 years ago, but I'm really struggling to make it work for me. I struggle to build sentences from individual words. I also struggle to respond in real-time, and people aren't very patient. I have a big struggle with phone calls with a captioning service; I get constantly hung up on because of the computer voice and my response speed. I've been laboriously typing out/scripting what I want to say in appointments in my AAC as whole paragraphs and just playing those paragraphs in appointments so far, or just continuing to have support staff speak for me because I'm too slow on AAC to do things like the check-in process and people yell at me for not talking. And typing everything out as paragraphs ahead-of-time only works for appointments and severely limits how much I can react to what happens in the moment or even make simple, real-time requests. I used to write out what I wanted to say at appointments and just hand it to the doctor before I had AAC. Surely, there should be a way to make AAC help me do things like chat with my friends or ask for things from my aide. I can talk some. But it's very difficult, not possible most of the time, and leads to some pretty volatile meltdowns from overload. I also have some trouble understanding speech, which is a while different question.

Open to any advice.

Oh, I also keep breaking my wheelchair AAC mounts because I'm not a very good driver. I'll tag wheelchair users, too, in case there's a better mount option than what's pictured.

Also, my AAC is Lingraphica.

[fantaprince]

this user is a part time AAC user

[chrome-barkz-aac]

i made this instagram post !!! there isn't as big of a community of AAC users on instagram so I thought I would share this on my instagram (@cytochromesea).

EDIT: i got an ask that states that not everyone knows what AAC is which is an oversight on my part, it stands for alternative and augmentative communication!

Image ID:

A light blue background with a rainbow and a cloud and some stars. There is a blue border collie with wings holding an aac tablet that says I love you! Text reads: AAC etiquette. Do’s, Don’ts, and other stuff. By cytochrome sea.

The same background appears in every following slide. Text reads:

AAC is my voice! It is not a toy or accessory

Don’t touch my AAC without my permission

Don’t take my AAC away from me, for any reason (joke, punishment, etc)

Don’t press buttons randomly or flip through my communication cards without permission

How would you like it if I randomly poked you on the mouth and throat (or on your hands if you sign)? It would be unpleasant, so don’t do that to me

Some AAC users can speak sometimes. It is not your business why someone can or cannot talk

Don’t ask questions about why an AAC user cannot speak. 

Do let us communicate however is best for us in that moment

Don’t ask us if or when we will be able to speak verbally. It’s not your business 

Do not value verbal speech more highly than AAC. Any communication is good communication

Some of us never talk, either, and that’s ok! Those of us who can talk sometimes are not better than those of us who can’t. None of us owe you an explanation for our use of AAC.

Don’t look at my screen until I show you. It feels really invasive!

It feels like when someone is looking at your phone screen over your shoulder, so please don’t do this

This applies to low tech AAC as well, don’t look at someone’s cards or letter board until they show you

You have the dignity of forming your thoughts in your head before you say them, whereas my thoughts are all on display. Please afford me the same dignity that you get automatically.

Don’t shame someone for not being able to speak verbally. It makes us feel horrible

We are real people with thoughts and feelings. Please treat us with kindness. 

We are trying our best

Don’t shame someone if their device mispronounces a word. It’s quite literally out of our control.

Other Don’ts. Don’t

Don't Treat an AAC user as childish or stupid for not being able to speak. Our ability to speak does not define our worth

Don't Show frustration at the way someone communicates

Don't Make comments about how fast or slow we communicate

Also don’t…

don't Act surprised when we swear or talk about adult topics like sex, drugs, or violence. We are not pure uwu precious smol beans, we are normal fucking people

don't Assume what is “wrong” with us. There are about a hundred reasons for someone to use AAC and you probably aren’t the expert in any of them.

“OK, so what CAN i do?” im glad you asked! When interacting with an AAC user, DO…

Ask us how we prefer to communicate and support us as you are able

Assume that we are competent

Talk to us with the same respect, tone and vocabulary that you would for any one else

Give us money (this one is a joke)

Understand that AAC grammar isn’t perfect and we are doing our best

Is it rude if…

I can’t understand your device? Not rude! Misunderstandings happen all the time in any conversation, just be patient as you would normally. 

I want to complement your AAC? Not rude!

I ask to see your AAC and understand how it works? This isn’t rude if you are already talking about AAC, but don’t ask random strangers this. They don’t owe you an AAC tour. 

Thank you for listening! This post is for the community! If you are an AAC user, let me know if I missed something in the comments and I will pin it! I hope you are filled with peace and love and I hope something good happens to you today! End ID. 

[asexual-amanita]

Going nonverbal is not a thing.

I’m a part time AAC user due to verbal shutdowns. I use a high tech AAC device, text to speech apps, communication cards and a DIY letter board.

A lot of people like me, who experience verbal shutdowns incorrectly label themselves as “nonverbal”. This misuse of language actually harms the nonspeaking community, and speaks over their lived experience. Nonverbal and nonspeaking describe a full time, long term state of being unable to speak much or at all.

This is not the same as sometimes being usually able to speak, but experiencing verbal loss.

Now don’t get me wrong, if you’ve been using nonverbal to describe yourself for a long time, only to realize that word wasn’t for you, it can be a big change. Even I was quite resistant at first to change my use of language.

But this is important. Nonspeaking people are so often left out of conversations, and so rarely given chances to share their opinions. But the majority of the nonspeaking community has made it clear that this is not a word for people like me, and it’s important to listen to them.

If you’re struggling to find a correct term for temporary loss of speech, here are some alternatives ⬇️⬇️⬇️

Verbal loss

Verbal shutdown

Speaking break

(Episodic) Speech loss

Communication shutdown

Losing words

[meeb-motes]

Reminder that ..

Image ID: an image of a sentence made using aac. It’s says AAC is for everyone no matter if speaking or not.

Anyone can use AAC . If it help in some way use it . If you like it better than mouth speak use it . If you need it use it. Use it if you want and if make you happy. AAC is for EVERYONE. ^.^

[nemo-bros]

i think lots of people do not realize how long it takes to set up aac (low tech or high tech)

low tech requires lots of printing and cutting and laminating and hole punching and more cutting etc

and high tech requires hours of sitting with device and customizing not just settings but words, folders, layout etc

[zebulontheplanet]

I’m gonna say this, and I’m taking a deep breath as I say this because it’s probably going to piss off some people lol.

Unless you’re nonspeaking/nonverbal, then you don’t get it. Yes, even if you’re a part time AAC user. Yes, even if you’re an occasional AAC user. Yes, even if you use AAC the majority of the time but are verbal or demiverbal or semiverbal.

You don’t get it. You don’t get what it’s like to rely completely on a device. On other people. You don’t get the fear, the anxiety, the loneliness, the pain. You don’t get the ableism we face. Or the fact that we can’t experience certain connections.

You don’t get that I can’t say thank you and therefore get weird looks. You don’t get that I can’t say please, or sorry, or anything like that. You won’t get what it’s like to have to make your parent your medical proxy because you can’t make doctors appointments yourself, so therefore they know everything about your medical history. You have no privacy. You don’t get what it’s like.

You don’t get the fear of seeing your devices battery slowly die because you’ve been using it but you still have hours left of class or you are out in public and know you need something to communicate but your device will inevitably die on you.

You don’t get what it’s like to go into the AAC community and see part time users be risen up and supported, then for full time users to be ignored and and told our experiences are so different that they shouldn’t even be talked about in these spaces because it leaves people out.

You don’t get what it’s like to be beyond frustrated with other AAC users because although they’re apart of our community, they’re forcing themselves into our conversations as full time nonverbal/nonspeaking users. You don’t get that frustration. The want to scream.

You don’t get what it’s like to see people push themselves into your community for only their self gain. For their own selfishness. For the sake of saying “I’m an AAC user too!!!! I can say these things!!” When no…I’m not talking about you. I’m not talking about part time AAC users.

I feel like people don��t realize that yes, AAC users are a minority themselves, and a marginalized community, but full time users, they’re a marginalized community and a minority within the very community that they fucking built.

Part time AAC users, occasional AAC users, people who are not nonspeaking/nonverbal, it’s time to start realizing your own privilege within the community. It’s time to start letting us talk too. It’s time to stop forcing your way into our conversations. It’s time to listen to us.

I get increasingly frustrated as the days go on, and I’m tired of being frustrated.

[spooksforsammy]

The communication bill of rights by Tobii dynavox

[mad-wheelies]

Here’s your reminder that AAC users can be absolute dicks, can have the worst opinions, can be the most hateful people on the planet. And that still doesn’t give you the right to take away their communication. Because you literally cannot do that to fully verbal/non AAC users. The fact that you think you CAN do that to a person in the first place is horrifically gross.

[antlerkitty]

I feel like sometimes there’s this assumption that part time AAC users have the privilege of being able to speak (and especially speak effectively) whenever it’s needed. And while that may be true for some folks, it is not true for all. Even simple words, please, thank you, sorry, I often struggle to say (barely getting it out or needing prompting like a little kid), or can’t say. And that can cause issues with coming off as rude.

And of course this isn’t the same experience as someone who is a full time AAC user, and I’m not trying to say that. But I see a lot of times where it’s assumed that part time AAC users are this one thing, a monolith where we all have these specific abilities, or all have certain abilities often enough that our lack of them isn’t causing any major issues.

[cielinginspace]

MINDSCAPE - Autism testing prep I'm going to get an autism testing tomorrow!! Here's a doodle for dat

I'm really anxious and nervous but also excited! I'll finally have an answer to the missing puzzle my whole life.

[neurodivergent-mermaid]

Even though i am nonverbal and even though my only way to communicate is AAC i sort of would feel more comfortable calling myself a part time AAC user even though im technically a full time AAC user,

Using AAC isnt that connected to my experience being nonverbal, infact it's actually very separated, i most of the time dont use AAC especially high tech AAC, i spent a lot of my day sitting in discomfort even crying because its hard for me to communicate even with AAC available

A lot of my use of AAC (i mostly use signs/gestures) is not understandable, even to my mum who has spent years getting to know my signs, it frustrates me, i think "why cant you understand what im trying to say!!"

Imagine if your life was a constant game of charades! Well thats my life! Thats how my life feels!

For me, AAC is uncomfortable, tiring and feels extremely inconvenient, but so does not communicating at all feel like that

I would call myself a part time AAC user but i fear people would misunderstand what i mean and think i can talk, which i cant, the other time im not using AAC, im sitting in discomfort giving up on trying to express my needs

[chrome-barkz-aac]

hey, if you’re a speaking person (or partially speaking due to speech loss episodes or what have you) and you hear another speaking person say shit like “going nonverbal” or “i’m semiverbal bc i go nonverbal sometimes”

stop that shit. program a button into your aac or keep a card in your communication cards or prepare a verbal script to inform others.

a bit lost as to what to say? try this one out for size:

“actually, nonverbal is a permanent state of not talking. it means you don’t talk ever, you don’t “go nonverbal”. some words to describe your experience could be, losing speech, speech loss episode, losing words, verbal shutdown…”

the nonverbal community does not need to do this on their own. we owe them that much.

spread the word like butter on toast yall! call out that shit when you see it.

[asexual-amanita]

Ahhh I love how I’ve set up my AAC! It makes it so much easier to use during verbal shutdowns!

[meeb-motes]

more of our AAC !!!

cw/; cursing

tried best to organize it nice and pretty ^.^!!!

[vixdesl]

𝐡𝐞𝐥𝐥𝐨 :𝐃 𝐈 𝐚𝐦 𝐜𝐮𝐫𝐢𝐨𝐮𝐬 𝐭𝐨 𝐤𝐧𝐨𝐰 𝐦𝐨𝐫𝐞 𝐚𝐛𝐨𝐮𝐭 𝐀𝐀𝐂 𝐝𝐞𝐯𝐢𝐜𝐞𝐬, 𝐢𝐟 𝐭𝐡𝐚𝐭 𝐢𝐬 𝐨𝐤? 𝐈 𝐚𝐦 𝐜𝐮𝐫𝐢𝐨𝐮𝐬 𝐥𝐢𝐞𝐤 𝐢𝐬 𝐢𝐭 𝐣𝐮𝐬𝐭 𝐚 𝐫𝐞𝐠𝐮𝐥𝐚𝐫 𝐭𝐚𝐛𝐥𝐞𝐭? 𝐨𝐫 𝐚𝐧 𝐚𝐩𝐩?? /𝐠𝐞𝐧𝐪

Hi friend! we hope this helps explain a bit :)

don't be afraid to ask any other questions :D