Idk What To Put Here- I Post About AAC A Lot :D

She/her ,24, HSN autism and have a physical disibility, live in a DDS group home! I am full time AAC user! use powerchair, tube fed, i go to adult day program two day a week!

[asexual-amanita]

Please understand that high support needs are substantially more than low support needs.

I hate to say it, but if you can hold a job with minimal accommodation from others, drive a car or take public transport independently, and handle most bADL’s and iADL’s with self-management strategies, you are not high support needs.

I by no means am trying to invalidate people, but it’s incredibly important to recognize where you actually lie on the full spectrum of disability. Otherwise we risk speaking over people who genuinely are HSN.

[the---hermit]

"is it better to read non fiction or novels?" No. It is better to read than not to read full stop. That is the only argument. Let's not create yet another fake scale of who is a better reader. I am so fucking tired of this kind of discourse. If you only read graphic novels you are still reading and that is better than not reading. If you only read middle grade books despite being in your 30s you are still reading and that is better than no reading. If you read one single book a year it is still good because you are reading. And that makes you a reader.

[questionable-method]

no but im so tired of how self-deprecation is always more accepted than self-advocacy. if i say i can't drive because im autistic i get questioned on how exactly that works and given a million suggestions on how to do it anyway and i look like im trying to be special so it's easier to just say im a loser. yeah i don't drive because im kind of a loser lmao. oh well. and people say lmao back and we move on. at worst they say "oh im sure you'll figure it out haha." but no interrogation!! being a loser is more respectable than being disabled. being a loser is something that doesn't make other people feel uncomfortable about their own biases. so no, no im not disabled. i don't struggle to keep friends and do the laundry and make quick trivial decisions and clean my room and brush my teeth because im autistic. it's because im a loser. it's my fault. it is what it is. at least im funny now. do you think im funny? please think im funny

[which-witchhazel]

For your entertainment, please check out this 1 Star review of an AAC app.

Mom: my son can’t talk let me get this app so he can

Son: *talks*

Mom: no not like that

Like you don’t put duct tape on your kids mouth if they keep saying “Shut up,” you teach them not to use it. It is the SAME THING.

ALT TEXT FOR SCREEN READERS:

Heading: ratings and reviews

Title: inappropriate language

One star

December 28

Review: Our son is three and nonverbal, we downloaded this app to use as iPad as an AAC device. At first glance, it’s very user-friendly and our son picked up the layout quickly and was able to use this as a form of communication. The reason I would give it one star and quite frankly no stars if that was an option is because there’s no way to hide inappropriate language like “shut up“, which should not be accessible to a three year-old on top of other words that you cannot remove. When I reached out to support their response was they don’t feel like we should limit words to children, which I agree with but having my three-year-old constantly hit the shut up button during school is not appropriate and there’s no way to remove it so don’t waste your money just spend the money on a different app that lets you have access to editing words to make sure that your children don’t get in trouble because while language is extremely important and I don’t wanna limit, I also don’t want to have my child constantly scolded because an app thinks it’s OK for a three-year-old to use the word shut up. We will not be renewing our monthly subscription and will look for a more accessible app that supports positive language reinforcement.

Developer response:

January 6

Thank you for sharing your feedback. Proloquo is designed to provide AAC users access to essential language for real participation and self expression. We include a very small number of age-appropriate swear words because access to language matters, and families can guide how words are used. 

[magiccarpetman]

I’m beginning to develop some militant opinions on AAC use as a one-size fits all band-aid in schools.

If every nonverbal kid in your school is given a tablet and the same AAC app regardless of their personal needs and abilities, every adult who regularly interacts with those kids needs to have spent, at minimum, an hour playing around with the same version of that app so they know what it can and can’t do and how the buttons work.

Especially because I keep seeing scenarios where the communication options a kid uses at home are different than the ones provided and enforced at school. In those cases especially, it is your job as their teacher to understand the technology better than they do so you can teach its use.

If you wouldn’t duct tape someone’s mouth shut for repeatedly making annoying noises with it, you shouldn’t take a kid’s AAC device when they choose to use it in a way that annoys you.

I still believe in the above when other students are distracted. As much as possible, the consequence for that should be the same you’d give to another kid being disruptive and noisy in class.

If you want kids to feel secure using a specific AAC method to ask for help or talk about their feelings, access to that method cannot be contingent on good behavior.

This has been my angry teaching rant, with seven hours left of the school day.

[zebulontheplanet]

I get really confused, and even angry sometimes at lower support needs people who don’t understand the true meaning of autonomy and when it comes to caregivers and guardianship.

I mentioned ONCE in a group about wanting to go into assisted living and looking into it. Immediately got dog piled by people saying to absolutely not go into assisted living because itd “take away my autonomy” and “I should just live with others for as long as possible.”

Assisted living, group homes, guardianship, whatever, can very much mean that someone actually GAINS autonomy. And independence. The goal is for quality of life. We should be focusing on quality of life instead of what YOU want. What YOU want as a lower support needs person because you’ve heard bad stories.

Higher support needs people often don’t get the decision. It’s life or death for them. Y’all HAVE to realize that.

Stop forcing your narrative on young higher support needs people who are looking into different options for their care. Yes. It’s SCARY to be put in a bad situation, but often times it’s trial and error for us. Y’all HAVE to realize that. We don’t have the privilege to pick and choose between if we just live independently or go in a group home. It’s group home, or death, or living in a fucked up, maybe even abusive situation already.

Stop it.

[turtley-ausome]

This! I live in a DDS group home and before this I was stuck in state hospital for 6 years so it actuly more freedom for me and the only place that woud take me with my needs!

[autisticghostss]

many autistic people need people use simpler words when talking to them

many autistic people need tasks broken into tiny steps to understand how do something

many autistic people need positive feedback in way that other think condescending

many autistic people childish and have childish interests

many autistic people have to always be supervised never alone because of risk of hurt self or get in dangerous situations

many autistic people have violent messy big meltdown, even in public

many autistic people struggle with speech always will maybe rest of life (non verbal, semi verbal, demi verbal etc.)

AND most of these autistic people higher support needs + level 2 & 3 autism, don’t forget or ignore us. can’t say “that not true just stereotypes” when it just symptom and sign of higher support needs higher level autism.

you want to raise awareness for lower support needs level 1 autism and yes good ok!!!! but not this way where throw HrSN level 2+3 autistic under bus.

- winnie

[unwell-radio-transmissions]

what 'cyberpunk dystopia already exists for disabled people' looks like for high tech aac users:

(here using 'voice' to mean both an aac program and an aac device.)

Your voice used to be free but now is behind a paywall. Your voice only runs on a subscription payment model and doesn't offer outright purchasing. The cost of outright purchasing your voice is several hundred dollars. Your voice runs ads. Your voice has planned obsolescence. Your voice ran out of funding and is no longer being updated. Your voice is free but requires coding knowledge to create. Your voice can only be used and accessed with a wifi connection. The people most trained to help you with your voice are expensive or unavailable specialists. You require additional aids to use your voice that are difficult to get and/or expensive.

Feel free to add on your own experiences. We listen to and look out for each other.

[kaninchenzero]

your voice may omit words about sex, reproduction, drugs, and other "adult" stuff, preventing you from being able to join conversations, express desire, or describe assault

[chrome-barkz-aac]

your voice is subject to software maintenance without warning which takes a week to fix

your voice is dependant on how well a large internet server is running (not your own personal wifi, AWS)

your voice is built with materials like cobalt and tungsten , that are mined with unpaid labor and horrific working conditions and is a product of one of the worst humanitarian crises at the moment.

[the-kneecap-god]

Normalize not using full sentences using aac.

Normalize using small words with aac.

Normalize not bullying or making fun of someone who is verbose when able to speak but isn't when using aac.

Normalize being patient for an aac speaker to type.

Normalize aac users in general.

[bebsi-cola]

i'll be honest. If you can't deal with someone wording things badly then you aren't going to be an ally to autistic people or indeed anyone with a developmental disability, intellectual disability, or disability that impacts language.

also you are never going to be safe for people for whom english is their second language. if someone clarifies their meaning and apologises and you can't accept that over the original wording then don't bother pretending to be autism friendly.

and like part of my autism is that i become convinced that the way i interpret words is the way that they're meant. my autism is disabling to my communication abilities. i have poor emotional regulation, i jump to conclusions. a lot of my reactions are informed by prior negative experiences. i can and probably have been overly defensive in the past.

and i've been misinterpreted so much and had my words picked over and mocked for saying the wrong things and mocked for being unable to say anything at all and it always feels devastating. it's ironic that the same disability that has me treated poorly would have me react poorly to a similar situation, but that's just how it is.

so i'm not saying you can perfectly manage all your reactions just by trying hard enough. especially considering how much disability affects these things. but i do think if you are completely unwilling to give autistic and other DD/ID people leeway for how they word things or understand that they have a disability that impacts their communication and give us grace then you aren't a disability advocate.

[autistic-twilight]

I think people have forgotten what high support needs means. It makes me frustrated. You are not high support needs if you can live on your own and hold a full time job. I am not sorry to say this.

[asexual-amanita]

Reminder for this April that the puzzle piece is not inherently bad. It wasn't created by Autism Speaks, rather by National Autistic Society in 1963, made to symbolize that autism was a "puzzling" condition. Many autistic people especially higher support needs folks rely on the puzzle piece's visibility and awareness for safety. Don't judge people solely by what symbol they use or prefer, there's far more important things to focus on this month.

[turtley-ausome]

Hi guys sorry I not on here in a while. Im still in hospital and it’s yucky. I think I will post some AAC stuff soon. I found out LOVE Unity and LAMP to if I change all the symbols to PCS ones (or SymbolStix but PCS is best)!

[turtley-ausome]

How did you choose your voice on your talker?

I listened to the sample for each voice i thoght i might like and then out of those I downloaded the top 4 or so choices and then i typed out a long message in my AAC and played it with each of those voices until i settled on one! I got comment before asking why i use child voice and reason is that it sound closest to what we can hear of my “natural” voice, plus the child voices sound more expressive and real wich i like!

[disability-shout-outs]

Shout out to folks with Childhood Apraxia of Speech!

[turtley-ausome]

Same anon from before but would you say the hospital is understanding of autism and do they accommodate you at all with anything like noises from beeps or scratchy gowns?

There’s nothing they can do about the beeps but I always have noise canceling headphones with me EVRYWERE including the hospital! Scrachy gowns yucky gives me rashes and are huge on me I am tiny I own multiple soft gowns called Brave Gowns and I bring them with me for admissions and ER trips and procedures! They have awesome prints to like stars and cats and unicorn and rainbow stripes!

They also write on my board that I use AAC to communicate so peple know, and sone nurses warn me before they use the pill crusher that it will be loud so I can put my hheadphones on first!

Hospital in general not understanding autism sadly but certin nurses are!

[dead-mad]

The lack of options for disabled people who can't live alone/fully alone is really scary. The options are residential facilities, supported living, aids, and other notoriously abusive and expensive things or family, friends, or a partner(s), who are also often abusive.

The risk of abuse when you're disabled and have to rely on others is very high and getting out of an abusive situation is already hard without being disabled. And if you do get out of it, then what? You're still disabled and still need that help.

[dead-mad]

This is not a post to go on and complain about you're dependent disabled family member since that's apparently not obvious. This post is not about abled people at all.

[turtley-ausome]

I hate that my only option is hospital institution or group home! Was in hospital 6 yers finaly got group home spot thoght my dream came true but in lots ways they are worse then hospital to me! They are abusive and neglectful and you can’t even TRY advocate yourself becase the staff all lie for each other to cover there butts. So many of them the big question is why did they choose this job if they are going to treat human beings like this? I don’t get it I don’t get it !