hi i’m charlie! i’m 21 years old. i’m a low-med support needs autistic system, and am verbflux :) i use aac with people i am close with but wish to use it more frequently as it both makes me feel more comfortable and brings me joy to use aac (despite its cons compared to verbal speech in my case)
for the record, i have no DNI
some parts in our system who might use this blog (expect if a post is not tagged with a name, it is an anonymous part, or we may not know who is fronting):
i keep coming to WIP pages on my aac with nothing to add or change because i don’t know how to organize it and organization isn’t the best feature on this aac app. you can only go one subcategory deep and the folders can’t be moved around between single buttons (the app is speech assistant aac) idk. how do you guys organize your verbs, adverbs, adjectives, etc? here’s what i have so far for my adjectives and adverbs. i need ideas…
we started with a big folder called "descriptors" and would basically add anything describing things, and whenever there were enough to form a category we'd give it its own folder
now we have like. our descriptors one (adjectives mostly), verbs, and nouns, and those are basically folders that hold more folders
our descriptors one is still kind of an exception, but if you go there it's divided into colors, personality traits, identities, shapes, emotions, etc, etc, and then you scroll down to buttons for whatever doesnt need it's own folder yet
and then our nouns and verbs folders just hold other folders :^ some of them overlap but it makes them easier to navigate. like people, locations, jobs/working, cooking, etc. and maybe cooking overlaps cause it has objects in a kitchen as well as "chopping" and "baking" and stuff
i keep coming to WIP pages on my aac with nothing to add or change because i don’t know how to organize it and organization isn’t the best feature on this aac app. you can only go one subcategory deep and the folders can’t be moved around between single buttons (the app is speech assistant aac) idk. how do you guys organize your verbs, adverbs, adjectives, etc? here’s what i have so far for my adjectives and adverbs. i need ideas…
I hate how often some (typically abled) people will go “well, if you can’t [get a specific support], then what?” when it comes to disabilities. As if it’s a “gotcha” moment. And then act like you’re exaggerating when you answer that question honestly.
Disabled people often die from a lack of support. A lot of disability aids are not a luxury, but a basic need in order to live.
“Well what happens if—” people die. People hurt themselves. People hurt others. Disabled people don’t magically become abled if our needs aren’t met.
If a bedbound quadriplegic is caught in a housefire, and there’s nobody there to save them, they’ll probably die. They won’t magically become able-bodied out of sheer will.
If a nonspeaking/nonverbal autistic is denied access to alternative methods of communication, they’ll suffer in silence. They won’t spontaneously become capable of speech.
Disabled people are disabled all the time. Our disabilities don’t go away just because they’re inconvenient, or if we’re in danger.
this is a reminder to reach out to the developers of your aac app to suggest things. i use speech assistant aac (which is only like $22 USD on ios and theres a free version on android and the paid version on android is roughly $10 USD) and i’ve made several suggestions and they have been nothing but nice and accepting and quick to respond to me!!! if you have suggestions for your aac app, try it!!! it might just work!!!
god i am so annoyed with trying to figure out if i am level 1 or 2 autistic. i always like to say i’d be a level 1.5 if it was a thing, but i fit some criteria from both 1 and 2 levels. i don’t expect anyone to tell me, but i just can’t tell and i need some help trying to figure it out. any questions and advice are welcome :,)
Let's talk about the term "Autism [Parent]" (mom,dad,etc.)
Is it just me or does it feel weird when allistic parents call themselves “autism parents”?
Like… something about that wording just gives me the ick.
Your child is autistic. That’s their lived experience. Their brain, their sensory world, their communication, their identity.
You are involved in their life; yes you support them, advocate for them, raise them, but you are not the one experiencing autism.
So why are you labeling yourself with it?
It starts to feel like you’re centering yourself in something that isn’t yours to hold.
And what really gets me is when it’s the same people who say “their autism doesn’t define them”... but then turn around and define themselves by their child’s autism.
Like which is it?? Because that contradiction is loud.
If autism “doesn’t define them,” why is it defining you?
It comes off less like support and more like identity borrowing.
It's like taking something that impacts your child’s entire existence and turning it into a label for yourself; one that gets you community, attention, or authority in conversations that should be led by autistic people.
Yeah, parents deserve support spaces. Raising a disabled child can come with real challenges.
But there’s a difference between:
“I’m a parent of an autistic kid”
and
“I’m an autism parent”
One keeps the focus where it belongs. The other kind of...shifts it.
Autistic people already get talked over enough; especially Autistic POC and HSN & MSN Autistics. Their experiences get filtered, explained, and often overwritten by the people around them.
So when even the language parents use starts pulling that focus away, it doesn’t feel harmless, it feels like part of the same pattern.
Like just… support your kid. Advocate for them. Learn. Listen.
But you don’t need to make their autism your identity to do that.
Please let me know your thoughts in the comments.
Do not talk over autistic people here.
Do not talk over POC or MSN/HSN autistic people either.
If you’re allistic or otherwise not part of those groups, this is a space to listen, not dominate the conversation. You can contribute and ask questions, but you are not the focus here.
Autistic voices,especially those who are most marginalized, should come first.
What I feel people frequently forget about autistic special interests is that they aren't always information based. They may simply be visual or mental
Someone may have a special interest in a show, but instead of that meaning that they will talk about that show often, it may mean they watch that show extremely frequently.
Special interests are ways of regulating, not simply encyclopedias we have in our heads. Sometimes it's watching something frequently. Maybe only listening to one genre of music, maybe it's a collection, maybe it's an action. I'm tired of it only being seen as autistic people's personal encyclopedias
