How I Communicate Besides My Device (Tw For Mentions Of Shutdowns And Catatonia)

How I communicate besides my device (Tw for mentions of shutdowns and catatonia)

I want to talk about how I communicate. Obviously, I use my AAC device for the most part, but I communicate in other ways too, depending on how coinvent it is.

A few minutes ago, my mother told me she was going to Mcdonalds to get a Capuchino, and asked if I wanted a Frappuccino, so I nodded, and then stretched my arms upward to show that I wanted a large one. This is one of the ways I communicate, body language and gestures. Gestures are really useful for me, because if I am communicating a simple idea, such as "I want a large Frappuccino", it is faster than using my device.

I also make noises. If someone is doing something to me that I don't like, I might make a noise that people associate with "no", such as "Mm-mm", or "Mhm" if I am saying yes. Someone touching my device without consent? Making a noise that means no, and pulling away is a good way I communicate that they need to stop.

I also type, because sometimes typing is a better option than my device. For example if I am currently in a catatonic state due to a shutdown, it is a lot easier for me to type a few simple words like "I go now, hurt" in my phone, rather than finding those buttons on my device.

And guess what? Everything I just described is a form of AAC!

AAC is more than just high tech devices like mine. AAC is also gestures, noises, typing, communication cards, pointing, etc.

Am semiverbal, & also experience situational mutism/speech loss/shutdown thingy sometimes. Agree. They are 2 different things.

Also I can experience additional speech issues due to breathing tics & breathing issues.

There are a bunch of experiences related to speech being hard; and they are different experiences which deserve different names.

Before describing being semi verbal if you are fully verbal:

Hate when people try to describe being semi verbal as just "its when you have speech loss sometimes! :) " no , semi verbal isn't "sometimes speech loss" other wise it would just be "speech loss episode " or something , no semi verbal is a permanent state , semi verbal is more like : have difficulty specking not the way people seem to think . Easiest explanation is : unreliable speech all the time , I can talk but its hard for me , its more than just "speech loss sometimes" its like need words but the thought of the word won't form and I feel like my mouth is wired shut like forcing it to open to make a word. I just seen this description of it and please stop trying to simplify being semi verbal when you aren't and are actually describing it incorrectly as just "losing speech" . Being semi verbal doesn't equal "just speech loss" . Even when I do talk I have a very specific way of talking , a bit hard to explain but a lot of pauses obvious struggling , I've seen a youtuber that is also semi verbal and I talk like them more or less

things that can & do & should coexist at same time:

not everyone have access to (autism) diagnosis because of racism ableism etc against marginalized identities such as race class sex gender etc.

having an autism diagnosis is not a blanket privilege because many are forcibly diagnosed as kid and abused specifically because of their diagnosis, disproportionately visibly disabled/autistic, high support needs, “severe”/labeled as severe, cannot mask, have intellectual disability, etc.

if have ability and choice in getting diagnosed or not. choose very carefully. because diagnosis allow you services but also open door to discrimination (take child away, not allowed immigration, harder to access HRT, seen as medically incompetent, etc) you have less chance of experiencing if you undiagnosed.

these above discrimination still disproportionately affect BIPOC, low income, queer trans, high support needs, have intellectual disability, visibly autistic ppl, etc.

but even being able to choose whether to diagnose self or not, is autonomy & advantage many people don’t have. some people don’t have choice, like cannot afford or access diagnosis, or forcibly diagnosed as kid. but also, people who not diagnosed as kid per se but as they grow up, increase disability thus need diagnoses for services (and can’t survive without them) and can no longer hide disability and autism.

I had to unfollow a blog today because they said autism “wasn’t a disability” and referred to the considering of autism as a disability as a negative, damaging thing.

I am on board with autism being regarded as just a different neurotype–to me it isn’t a disease, an illness or even a disorder. It’s just a word that describes how my brain works and certain similarities I may have with other people who also possess that neurotype.

But, in a world created by, created for and dominated by allistics and the needs of allistics, with allistic expectations for my behaviour and social interactions, and allistic-favoured composition of the settings that surround me, autism is to me a disability. Autism combined with social anxiety means I mumble, which has made a few social situations difficult and stressful. The sensory processing disorder that comes with autism means I can’t bear it when people wear perfume. The prosopagnosia that comes with autism means I can’t remember faces and can’t match names to faces. The sensory processing disorder that comes with autism means I can’t process sound in a loud environment, meaning that I can’t follow conversations. The difficulty I have with spoken communication when stressed or tired, solely a factor of autism, has resulted in my being abused. I had to quit a retail job in part because of customers being unhappy with my facial expressions, expressions that don’t fit allistic norms. And so on, so on, so on. There are many things I cannot do, or cannot do easily, or can only do in certain circumstances or with certain supports, or cannot do in the ways expected of me, because of autism–and yet society unfairly and unquestioningly expects everything I listed above to not be any kind of difficulty. Society seldom even comprehends the difficulty in all of the above, never mind providing suitable and accessible supports in order that I can more easily interact with the world or be understood by it.

All of this is exactly the same as my experiences for my other main disability–chronic pain. Something else that also means there are many things I cannot do, or cannot do easily, or can only do in certain circumstances or with certain supports, or cannot do in the ways expected of me, despite society expecting me to navigate all its demands while unaffected by pain. Something else that is seldom comprehended by society, and something else that doesn’t result in my receiving suitable and accessible supports so I can more easily interact with the world.

The social disability model gives me a pretty clear map for regarding autism as a disability, because it is not accommodated by society in any significant way, and that lack of accommodation is what so often makes a wide variety of disabilities disabling. If my pain were fully accepted and accommodated by society, if I had free access to a variety of technological aids and human supports, it wouldn’t disable me anywhere near as much as it does–it might not even disable me at all. But I don’t have those things, and so it does. Autism isn’t any different.

If we lived in a world where providing for the needs that accompany my neurotype were as commonly accepted as the provision of clothing against freezing or burning (and clothing is an accessibility aid, for it lets us do many things we cannot do without it), then no, I wouldn’t consider it a disability.

I don’t live in that world.

Maybe you don’t consider autism having any relationship to disability, and that’s fine. But please, please don’t erase those of us who do consider autism a disability. Please don’t treat our considering autism a disability as a bad thing that should be corrected or stopped. I don’t regard autism as a disability from a place of negativity. I don’t want to be allistic; if I had the opportunity to become allistic, I wouldn’t take it. Autism shapes how I create and how I think; it is far too entangled in my creativity and identity for me to choose not to have the struggles that come with it. Yet I have needs that still go misunderstood and unaccommodated by wider society, and that is too close to my experiences with chronic pain for it not to be, to me, disability. That’s all it is.

The framework of disability is how I make sense of who I am as an autistic in a world that is set on trying to erase my struggles and provide me the least amount of recognition and support possible. It isn’t a negative thing any more than calling my chronic pain a disability is a negative thing. Disability is, in fact, an empowering term that gives me understanding, connection and community. Rejecting it won’t support me–it only does me damage.

If you want to separate yourself from that, by all means do so–for you.

Please don’t deny me that framework and identity, as someone who considers myself disabled in part because I am autistic.

NEUROPUNK

What is neuropunk? Neuropunk is a community for neurodivergent people (autism, adhd, epilepsy, dyspraxia and so many more) with a flair of punk politics and subculture. This means not giving a fuck what others think, radically accepting your situation and unapologetically being yourself.

What might you post in the neuropunk tag?

Posts looking for community and solidarity and to connect with one another

People sharing their experiences

People sharing their aids such as headphones, earplugs, tinted glasses that help with dyslexia, sunglasses, stim toys, compression vests, gloves, soft clothing and more

Brand recommendations for sensory safe clothing and aids

Tips for apps that can help us

Crowdfunding efforts and mutual aid

Unfortunately, the neuropunk tag is currently just people arguing over cpunk. Come on guys, we can do better than that! Let’s work on making this community work for us instead of invading established spaces.

For mentally ill folk, check out madpunk and for an autistic specific tag, check out autipunk.

@noodle-shenaniganery I promise I’m working on your ask about what “soul” is, I have just been way too sick to answer the way I want so will finish answering eventually