wellylegs

[wellylegs]

autism awareness & autism acceptance not either or. not mutually exclusive. can coexist. need coexist.

“there enough awareness for autism already 🙄 we need acceptance”

ok. you aware of high support needs autism? aware what that even means? not “need reminder take meds need remind take shower” “high” support needs autism, but “need full physical help do bADLs lack danger awareness may accidentally hurt self or even kill self without support” high support needs autism? not just higher support needs people who can be independently online do advocacy, but those who need help from others even be online, or those who cannot be online at. all.?

aware of nonverbal nonspeaking people? not just nonverbal nonspeaking people who can write grammatically correct cannot tell apart base on writing. not just nonverbal nonspeaking people who can be online who can advocate online.

aware of nonverbal nonspeaking people who cannot communicate in way that easily understood, either for now, or ever? aware of nonverbal nonspeaking people without functional communication, aware of how without functional communication, how that drastically limit communication, even though behaviors are valid communication? aware of nonverbal nonspeaking people who may never use AAC fluently even with best support?

aware of technically verbal but very limited verbal autistics who may only able say wants & needs but not other things and certainly not online advocacy, “despite being verbal”?

aware of just how much our life depends on caregiver/carer/PCA/etc? aware how vulnerable that make us? aware of abuse from caregivers? aware of caregiver burnout from lack of support for caregivers, & how that impact our care we receive? have you even heard of term respite care? aware of those of us who cannot separate ourselves from caregiver? aware of those of us who cannot participate in autism community without caregiver?

aware of visibly autistic people? aware how we not automatically believed? aware how we often bear blunt of violence because we most easily identified target because we visible? aware visible =/= get support, aware that many those diagnosed severe who now adult so no longer qualify for services under 21 year old, languish in hospitals because nowhere to go? aware how long life saving necessary waitlists are? aware that even to this day parents have to fight school fight day service fight government fight insurance for them give their nonverbal nonspeaking child AAC & be properly taught how use it? actually, are you aware of how properly teach AAC to nonverbal nonspeaking, developmentally delayed child who may or may not have intellectual disability?

actually, aware of autistics with (correctly diagnosed) intellectual disability & how they make up big amount of autistic? aware of institutional systemic & legal impact of mental [r word] right & the human rights abuse justified using r word right? wait, you aware that r word come from old term for intellectual disability, that, actually, still in many laws because no one bothered updating, right? aware of what severe profound ID look like? and aware they real and they still human deserve education deserve life deserve care, yes?

aware of early diagnosis 20 30 or even 10 years ago, not same as now, even less resources & knowledge about autism now? aware that while gender race class 1000% impacted diagnoses, a lot of early diagnosed people early diagnosed because… they die without support unlocked by diagnosis, right? but also, aware that in old times, early diagnosis often did mean doom, not because autism bad or anything, but because severe lack of support & diagnosis can literally bar you from so many things including basic education?

aware that for many people in special education, which impact specific group of autistic people, they not get degree when graduate high school, they just get certificate, which limit their educational & employment opportunities & others?

aware of life saving importance and necessity of masking for autistic of color especially Black autistic people, despite stress inducing traumatic? aware that live in broken system be victim of hate crime & police brutality just as traumatic often even more traumatic than masking? aware that many Black & other parents of color forced to teach their child masking because of this?

are you aware of most marginalized autistic people? aware of leadership of most impacted?

aware you can and need to care about autistic experiences & form of autism you not experience? aware that you can and need to do that without try twist your experience into our experience into our words our community?

aware that advocacy goes beyond about you?

aware that you can’t speak for all autistic? aware that you shouldn’t speak for all autistic?

are you aware of when you need to stop talking & listen & amplify others? aware of when and how to decenter self?

aware that even this long post, barely scratch surface? still so much to say?

[better worded version of original post]

[wellylegs]

hello dark mode users :)

.　　　　　 　　　　　　　　　　　　　　.　　　　　　　　　　 ✦ 　　　　 　 　˚　　 . ✦ 　　　　.　　　　　　　　.　　　　　　　ﾟ　　　　　.　　　　　　　•　　　　　　　　. 　 ,　 　　　　　　　　　　　　　　  　　　　　　   　　　　　　.　　　　　　　　　.　　　　　　　　　　　　　　 ✦ .　　　•　　　　　　　 ✦ 　　　　   　• 　　　˚　　　　　　　　　　　　　　　　　　　　   　　　　　　.　　☄　　 . 　　　　　　 　　　. 　　. 　 　　•　　　　 ✦ . 　.　　　　　　.　　　 　 　　　　 　　　　　　　　　　　　.　　   　 .　　　.　　　　　　　　　　.　　　ﾟ　  　　　.　　　　　　　　　　　　　 ✦ 　　　　　　,　　　　　　　.　　　　　　    　　　　 　　　　　.　 　　 　✦　　　　　.　　　　  . ☀️ 　　　　　　　　　•　　　　　　　　　    .　      　　　.　　        　　　　　　　　.　　　　　. • 　　　　　　　　.　　　　　　.                      .                   .

✦　　　　.　　　　　　       ✦　   　　　　     .　　　　　　　　　　　　　　　　       　   　　 　　　　　　　　　　　　　　       　    ✦ . • .

　　　　　　　•　　　.　　　　　. 　 🌏　 　　　　　　　　　　　　　　  　　　　　　   　　　　　　.　　　　　　　　　.　　　　　　　　　　　　　　 ✦ .　　　•　　　　　　　 ✦ 　　　　   　• 　　　˚　　　　　　　　　　　　　　　　　　　　   　　　　　　.　　☄　　 . 　　　　　　. 　　　. 　　. 　 　　•　　　　.        . ✦ .　　　　　　　.　　　 　 　　　　. 　　　　.　　　　　　　　.　　   　 .　　　.　　　　　.　　　　　.　　　ﾟ　 .  　

​　.　　　　　　. 　 　　.　　　　　　.　　.　　　　  　　　　　　   　　　　.　　.　　　　　　　.　　. 　　　　　　　　　　　　　　 ✦ .　　　•　　　　　　　 ✦ 　　　　   　• 　　　˚　　　　　　　　　　　　　　　　　　　　   .　　　　　　.　　☄　　 . •　　　　　　　　　    .　      　　　.　　      .  　　　　　　　　.　　　　　. • 　　　　　　　　.　　. 　 　　•　　　　 ✦ 　　　　　　　.　　　 .　 　　🪐　　 　　.　　　　　　　　　　.　　   　 .　　　.　　　　　　　　　　.　　　ﾟ　  　　　.　　　　　　　　　　　　　 ✦ 　　　　　　,　　　　　　　.　　　　　.　    　　　　 　　　　　.　 　　 　✦　　　　　. 　 　　•　　　　 ✦ 　　　　　　　.　　　 　 　　　　🌘 　　　.　　　　　　　　　.　　   　 .　　　.　　　　.　　　　　　.　　　ﾟ　  　　　.　　　　　　　　　　　　　 ✦ 　　　　　　,　　　　　　　.　　　　　　    　　　　 　　　　　.　 　　 　✦　　　　　✦ .　　　•　　　　　　　 ✦ 　　　　   　• 　　　˚　　　　　　　　.　　　　　　　　　　　　   　　　　　　.　　☄　　  . •　　.　　　　　　　    .　      　　　.　　        　　.　　　　　　.　　　. 　　 　✦　　　　　✦ .　　　•　 　　　　　

🔭

[wellylegs]

autistic people dominate AAC conversation on tumblr so for this AAC awareness month (October), let us also remember all non-autistic AAC users & autistic AAC users who not use AAC because or solely because autism.

people use AAC for from intellectual & developmental disorders to neurocognitive disorders to neurological to physical disorders. people use AAC for disorders from birth & acquired disorders. progressive & non progressive disorders.

some AAC users have mouth speech, motor, and/or sound clarity related difficulties, others use for language and/or cogntive difficulties, some for combo of reasons.

those with…

intellectual disability

genetic & chromosomal disorders like down syndrome, rett syndrome, angelman syndrome, williams syndrome, etc.

cerebral palsy

speech language disorders like aphasia & dysarthria

schizophrenia & schizoaffective & schizo-spec

brain injury

dementia

amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), huntington’s, frederick’s ataxia, etc.

tracheotomy

locked in syndrome

n so much more not listed here

[wellylegs]

catch a dailymon that is entirely too hard to get despite what it is

You Caught: Disability Benefits!

[wellylegs]

Bugs

[wellylegs]

One of the things I hate about being a picky eater is the perception that we are snobby or pretentious about food. And like I understand if you make food for someone and they don’t want to eat it because of a certain ingredient or the whole thing, it hurts. I’ve cooked food for people, I get it, you want people to enjoy it and picky eaters often won’t even try it.

The funny thing is, I’m always looking for food to like so I will in fact try anything I haven’t had before. But if a food is a trigger for my GI issues or doesn’t make it past my autistic taste buds, I’m not going to try that thing again. Especially if it does make me sick.

It is not fun to go out to eat and look at a menu and at best there’s one or two things to eat, and one of things is usually is a Cesar salad. I would love to go to a party and be able to eat anything offered. I’m eternally frustrated at my picky eating, so you all need to understand it’s not a choice that I make. When I eat food I don’t like, even if it isn’t a trigger, I feel ill and my appetite shuts down until that food is gone. I wouldn’t wish this shit on anyone.

So next time you feel like judging us, just take a minute or two to think about how absolutely miserable it is to have such a limited taste for food. Really consider the impacts especially in situations where food is limited. We’re not out to make food servers miserable we just want to be able to eat.

[wellylegs]

one thing i wish ableds would remember is that, unfortunately disability doesn't magically pause for holidays, special events, or celebrations. just because it happens only once a year or you saved up for it doesn't mean that people are not disabled. the fact that a member of your group is disabled should have been included in the planning in the very first place because we can't just wing it or push through.

[wellylegs]

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 .

[wellylegs]

People acting like everyone can fit neatly into the binary of trans and cis

this is exorsexism.

[wellylegs]

as a crutches user i'd like to shout out to people who use other sorts of disability aids! people who use AFOs, oxygen tanks and concentrators, braces and compression garments, continuous glucose monitors and insulin pumps, a white cane, AAC devices, any type of feeding tube, hearing aids, ventilators, a tracheotomy tube, a hoist to transfer, commodes, incontinence pads, adaptive cutlery and kitchenware, rails, braille displays to name a few! there's so many disability aids out there in the word to help people live their lives and i wish for everyone to have access to them whenever they need

[wellylegs]

[wellylegs]

Able bodied people are so obsessed with refusing physdis people our own spaces, or own discussions, our own anything. Nope their experiences are exactly the same actually no need for us to speak ever, only their voices need to be heard. Clearly they know best about our experiences because nobody could ever possibly have it worse than them

[wellylegs]

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. 

[wellylegs]

sign brendan saw last night

[wellylegs]

[wellylegs]

the thing about saying “um some autistic people are actually intelligent” with regards to proving our humanity is you are still tying intelligence to humanity.

[wellylegs]

No, you don't need to list your disabilities/illnesses in your bio or anywhere on your blog/profile.

No, you don't need to tell anybody anything when they ask you what your disabilities/illnesses are.

You have the say on what/how much you disclose about yourself. Nobody is entitled to your personal information.