Miles!

If someone talks about being unable to do something without assistance due to a disability, and how that influences their life, how that dependency on others is scary and can be exploited etc. And your only response is "I experience this except I end up doing the thing by myself because no one helps me". and then they tell you "hey, you deserve to get support for this when you need it. but this is actually not the same as my experience because if i do not get help i absolutely can not get it done by myself. Like I'm fully unable to do this." And your response is to get mad / accuse them of trying to be "divisive" / telling them they're dismissing your struggles / blaming them for your feelings about this response essentially / calling them ableist for literally just pointing out the fact that there is a difference between these situations / etc, then you are the problem.

Just for a minute try to imagine what it's like. That you can not do something without assistance. Let's say you absolutely can not drive a car even if your life depended on it. You completely rely on being driven around. You can not do anything that requites a car without another person being physically there the entire time and holding the steering wheel. And tons of people see you talk about that and join in with "yeah I also can't drive in theory, but I still do it because I have to because my life depends on it". That does not feel good. That is a constant reminder that hey! Other people can totally do this even though its hard! If your support vanishes you can not do this thing your life depends on no matter how hard you try! The voices of people who actually experience the same thing as you get drowned out in the flood of these "I totally get it"s from people who do in fact, not totally get it. Because In reality, one of you is sitting behind a wheel and the other isnt and Never Will.

Thank you for all the interaction and kindness on my last post!

My name is Margaux and I am also known as Retrophiliac. I am Autistic, OCD, ADHD - I have Anxiety as well. I am self employed and an activist and advocate based out of western Canada. One of my pins is even in the Museum of Vancouver's openMOV!

I design pins, patches, stickers, keychains, magnets and so much more.

The items have a disability, neurodiversity, autistic focus - as well as really cute retro inspired designs.

I am on Etsy and I also have my own shop Shop best for USA & Canada.

Etsy will handle VAT, VOSS and IOSS for international orders.

But it's entirely up to you. My shopretrophiliac site has a larger selection including fidgets.

I also post frequently on instagram, facebook and tiktok.

P.S:

I run a few awesome facebook groups:

Made by Autistics Marketplace and Community

Autistic inclusive dating and friends

Neurodivergent Skills Connect

Disabled Entrepreneurs/Self Employed in British Columbia

image description under the cut bc its long

Most of us, who are nonverbal "from birth", struggle with language, to communicate, and to understand complex concepts. That's why we never learned to speak at all, ever.

But their strategy is to "hand us the mic" and ask "What are some misconceptions about nonverbal autism you'd like to discuss?" and expect us to respond.

"Misconceptions" is an abstract concept. Most of us can't just come up with an answer; my mind, for example, goes completely blank when I read this.

I wanted to talk about allies assuming that our brain works similar for at least 2 weeks, but it's only now that I am able to write something. 2 weeks!

Sure, there are autistics who can't speak due to apraxia, and who don't struggle with language otherwise, apart from the "not being able to speak with their mouth" part. But that's rare.

Even my ability to express myself well is rare. I am not your average nonverbal autistic. I am very skilled compared to the rest of us.

One thing about "never learning to speak" is that most of us really really struggle with language, and with understanding big words and topics. Not everyone, but many of us. That's why most of us aren't on social media.

Whenever I write "educational" posts, my inbox is flooded with follow up questions I just can't answer without help. Because most of the time I don't understand the text. I regularly have to close my inbox because people assume that I can process the text and respond like everyone else can. But having these abilities is an exception within autistics who never learned to speak from the very beginning. It seems normal, but those people just are the loudest. Because they're on social media and love to participate in discussions.

Most of us can't do that.

I'm glad that I made some speaking friends here who made an effort to understand us thoroughly, and they now often repeat what we think and want "but louder". Listen to them, most of us can't advocate for ourselves. They're not speaking over us, they're helping us to communicate without draining our energy.

ID 1: a photo taken from behind showing Echo mouth painting on an iPad which is propped up by a lap tray sitting on a desk

ID 2: if photo of the tablet with a drawing of a dog on it showing the lap tray on the desk / end IDs

I use my height adjustable desk which means my wheelchair fits underneath. On top of that I have a lap tray with a slit to hold a tablet. This is designed to tilt the screen away from you which makes it really difficult to reach the top of the screen so I use it backwards. Because my iPad is in a case I can set it up so that all the usable screen is accessible.

a very wise woman gave me a piece of advice. She told me to start a journal. In the morning, she said, write down the percentage that I felt I was that day. 20% Maggie. 90% Maggie. Then I should write down what I accomplished that day.

I thought at this point she was going to tell me to admire how much I'd gotten done each day despite M a [sic] being ill. I didn't want that, I didn't need a pep talk. I needed my brain.

But that wasn't what she said. She told me: write down what you've managed to do on a 20% day, what you've managed to do on a 40% day. Eventually you'll have a guide so when you wake up and you're at 20%, you won't try to do the things you do on a 40% day. You'll know you can just go watch a movie or sit with your goats or whatever and not feel guilty, because you were never going to write words you could keep or be able to exercise or whatever.

And that was the right way.

It meant I no longer labored for 12 hours each day, doing nothing but trying to smash my way through a draft. Instead I slowly began to write bits and bobs in on my good days. A funny thing happened then: once I was not spending every second forcing myself to do things I couldn't, I found I had enough energy to actually start to work on myself. To look for patterns in my good and bad days. To research healthcare providers and new studies on what was wrong with me still. Slowly I found I was able to chain more of the 60% days together, then 80% days. Slowly I began to realize that although it was taking months, I was improving overall.

/end]

I think when a lot of people see “independent” they assume it means living alone without other people. And some people assume that independent living services aren’t for them because they need 24/7 care. Or non disabled people think it’s pointless because many disabled people can’t live on their own.

yes. not even “going nonverbal”going nonspeaking.” but fully “i’m nonspeaking.”

i’ve even see autistics who lose speech do an imitation conversation on tiktok that goes like this:

“i’m nonspeaking”

“but… you’re speaking right now?”

“yes! you can be nonspeaking and still speak! follow me to learn more!”

and like. i’m begging speaking autistics to actually learn from nonspeaking advocates.

so many of them are just. seeing the cool new word “nonspeaking” from another fellow speaking autistic who lose speech. and then go like, “oh that’s cool word that’s me now!!” while completely divorced from the origins of the word, completely not knowing nonspeaking advocates exist, completely appropriating the word.

many of them they unable to think of a world where someone more marginalized than them where someone have experiences they can’t relate to.

and when you point it out, hey it’s not your word, they say “well it’s my term too!!”

it makes me so so angry. and unfortunately it is a pretty prominent dominant narrative of one side of online autistic community

(Though it's clear you made this post out of frustration; and mentioning that it's a problem, even without explaining why that is, can reach people who need to look into it and give them a reason to do so.)

At first there was the term nonverbal for autistics who never learned how to speak more than a few utterances, or who can't speak verbally at all. This is an official term.

Some of us who are considered nonverbal found the term "nonverbal" unfitting because we don't simply communicate nonverbally, we communicate with signs or written words, etc. So some of us coined the word "nonspeaking", to indicate that we may not speak, but we stil can communicate in other ways and may be able to read and understand others, etc. "Presume competence" is the key word here. (Nonverbal and nonspeaking is a personal preference, we use it interchangeably, but those who prefer nonspeaking often will be pissed off when you call them nonverbal, because to them this means you think they're incompetent and talk over them. It's about self-advocacy).

So nonverbal is an official term for autistics who can't speak more than a few utterances ever. Nonspeaking is a term coined by us for us, only. So this is the appropriation part: You take a word we coined for us to advocate for ourselves and make it about something that has absolutely nothing to do with us being marginalized and oppressed, no, you actually make it about yourself 🤦🏻‍♀️🤔🤷🏻‍♀️

Then, about nonverbal... There are people who think that nonverbal/nonspeaking autistics can be trained out of their inability to speak, which isn't true. But if you say "going nonverbal", you push this idea that it's possible to make a truly nonverbal/nonspeaking autistic speak if "we just practice hard enough". Because "I saw this autistic who went nonverbal and when they were forced to speak at first they struggled, but THEN they got a couple of words out, so if we just try hard enough, it's possible for every autistic to speak!!"

Many of us are put in therapies where they force us to speak because they think this is the right thing to do. But a method like that will only make us anxious at best, and extremely traumatised at worst.

So this is the very bad thing about using the term nonverbal when you actually are verbal but sometimes can't speak anymore. There is another thing that isn't very bad, but still bad nevertheless:

We are ignored. Once again. You will look up nonverbal and only find autistics who are verbal but can't speak anymore from time to time. It doesn't matter that you differentiate in adding "going" in front of "nonverbal", search engines don't care about that. Everything is about verbal autistics who struggle with speech under certain circumstances. We are ignored. The thing is that you can spread awareness outside the internet because you can speak. Haha. And we? Well, we're being ignored as always.

Now a thing that is simply annoying:

If verbal people who can't speak under certain circumstances share their experiences and tag these posts as "nonverbal"........ Then we, who are nonverbal/nonspeaking, will browse our(!!) tag to find relatable experiences and only find off topic posts. And yeah, you can imagine that it's a little annoying to browse a tag and find it littered with off topic things.

Before you ask: There is a term for autistics who sometimes can't speak: Losing speech or speech loss episode. But I've heard of people who don't like the "losing" part of the term, they prefer the "going" because that implies slowly moving into a certain direction. So you all are absolutely welcome to invent new terms for your experiences. This then will be a term coined by people like you for people like you and we nonverbal/nonspeaking autistics will not use it, because that too would be appropriation then ☝🏼

"here is a list of the kinds of support I can give you right now, please select one and I will do it for you": ✅️ fucks, very kind, easier on the overwhelmed person (me), sexy ✅️

A steampunk-themed stimboard with gears, clocks, and glitter!

A stimboard with rainbow and holographic glitter!