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the neurodivergent experience:

20% of the time: wowwieee!!! i love my passions and interests!!!!! they make me so happy i want to jump up and down!!!!! weee!!!!!!! :3333333333

80% of the time: this mind is a prison

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"Autism isn't a disability" you tell me as my family are all considered carers for me,

"Autism isn't a disability" you tell me as i receive disability benefits for my autism

"Autism isn't a disability" you tell me as i have special needs so severe i cant even attend school

"Autism isn't a disability" you tell me as i am nonverbal

"Autism isn't a disability" you tell me as i can't regularly dress, bath, do grooming tasks without help or at all

"Autism isn't a disability" you tell me after I've spent months of my life requiring 24/7 1-1 supervision

"Autism isn't a disability" you tell me as i am housebound

"Autism isn't a disability" you tell me as i am officially diagnosed with nothing other than autism.

Maybe autism is a disability, and maybe you just don't want to accept you are disabled because of the stigma around disability? All autistic people are significantly impaired in areas of functioning, even if that makes you uncomfortable, that is the truth. And maybe you should spent 1 minute to go and read the diagnostic criteria for autism. That all autistic people meet.

Autism is a disability, and when you advocate that it's not, you are making real world harm, especially for people with substantial support needs.

They don't give disability services to non disabled people, so please, when your advocacy includes limiting services for those of us who need them the most, is it advocacy or are you just harming people who are already in positions that they can't advocate and be as loud as you.

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growing up autistic / growing up gaslit

I.

this is the first lesson you learn: you are always wrong.

there is no electric hum buzzing through the air. there is no stinging bite to the sweetness of the mango. there is no bitter metallic tang to the water.

there is no cruelty in their laughter, no ambiguity in the instructions, no reason to be upset. there is no bitter aftertaste to your sweet tea, nothing scratchy about your blanket.

the lamps glow steadily. they do not falter.

II.

this is the second lesson you learn: you are never right.

you are childish, gullible, overly prone to tears. you are pedantic, combative, deliberately obtuse. you are lazy, unreliable, never on time.

you’re always making up excuses, rudely interrupting, stepping on people’s shoes. you’re always trying to get attention, never thinking about anyone else, selfish through and through.

it’s you that’s the problem. the lamps are fine.

III.

this is the third lesson you learn: you must always give in.

mother knows best. father knows best. doctor knows best. teacher knows best. this is the proper path. do not go astray.

listen to your elders, respect your betters, accept what’s given to you as your due. bow to the wisdom of experience, the education of the professional, the clarity of an external point of view.

what do you know about lamps, anyway?

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Tips for Setting Up AAC:

Transcript: "I have been seeing many people on here saying they feel overwhelmed or confused about how to set up their AAC devices. I thought I would give a tour of my device to give people a place to start with putting together their own pages.

To start with, this is my core words page, it is the first thing I see on the app when I open it. The core words page has the most commonly used words in the English language. My grid has sixty buttons on each page because that is what is accessible to me, but you want to have as many buttons as you can access on each page to make navigating as quick as possible.

There are two main ways I know of that AAC devices are organised. The first is by parts of speech, the second is by category. I use bits of both in my device.

For example, I have folders for nouns, verbs, adjectives and adverbs, and little words like conjunctions and modifiers, which are parts of speech, but I also have folders for time, feeling, and common expressions, which are categories.

Here us my describing words page. It has a lot of common adjectives, and also has sub folders for specific types of adjectives.

"High"

"Below"

"Together"

"Funny"

"Weak"

"Whole"

"Rainbow"

Here is my feeling page. It is alphabetized and colour-coordinated by letter so that I can quickly find the colour of the letter I want without having to look through the whole list.

"I feel"

"Happy"

"Delighted"

"Confused"

"Overehelmed"

"I don't know what I'm feeling"

"I have lots of big feelings right now"

My quick fire page has whole phrases instead of single words.

"Me too"

"This device is my talker, it helps me communicate"

"Stop!"

"The time is 1:47 pm"

"I like you"

"Congratulations"

"That is frustrating"

Blithering idiot!"

"Not my circus, not my monkeys"

Under my core words page are more specific topic folders. They have a mix of nouns, verbs, and adjectives that are specific to the topic.

For example, here is my food page.

"Food"

"Breakfast"

"Hot dog"

"Coconut"

"Herb"

"Pitcher

"Thaw"

Some of my topic folders also have phrases, like my errands folder.

"I'm just looking, thanks"

"Do you have"

"How much is that?"

"Credit"

"Card"

The last thing I want to add is that AAC can have more uses than just communicating. I have a folder of recipes that my care providers help me put together to help me learn cooking skills.

"Let's make brownies"

"10 tablespoons butter"

"1 1/4 cup sugar"

"1/ teaspoon salt"

"Preheat oven to 325 degrees"

"Grease 8 by 8 baking pan"

"Mix butter, sugar, cocoa powder, vanilla"

"Mix until smooth"

"Bake for 20 to 25 minutes"

You can make folders for things like grocery lists, routine, social stories, anything you want.

Anyway, I hope this tour was helpful, if you have any questions just ask.

"Questions"

"Thank you. For. Watching"

Thank you for watching.

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if you think family etc people take you more seriously believe you more understand your communication needs more support your AAC needs more if you nonverbal you so so far removed from nonverbal (< long term not temporary!!) experience.

my birth family still see my nonverbality as not *want* talk, still explain to other people that way—n am cannot correct them!! because NONVERBAL & not really able use AAC nowadays! so this wrong n dangerous (!!) idea spread!! they still see my mouth speech as something if try harder will happen, as something if ask enough ask sternly enough demand enough abuse enough will happen.

n promise people who nonverbal from birth not treated any better either

nonverbal people do not get automatic believed!!! wish we do but unfortunately we do not!! it more likely that we can’t defend ourselves when not believed than we get believed first try!!

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good thing I learned today is that Nintendogs does work using AAC. It's just a bit hard to hold the DS and tap on the screen of the AAC device when teaching the dog tricks and sometimes it doesn't hear what the AAC says. But it does work so yay

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I hate how people believe that AAC will automatically fix and make everything better. Like it’s this magical thing that will fix all your problems. And I’m mostly referring to the parts of the community that are mostly speaking people. I realize completely that AAC could help a LOT in these situations, but sometimes, it can cause more harm than good.

This is just in my observations and experience, but the amount of ableism that AAC users experience is ridiculous. The amount of people who believe that if you use AAC, you are this zoo animal who has suddenly gained a talent and must be stared at and gawked at.

AAC will NOT fix your family problems. Your family will still be ableist. AAC will not fix all your speech problems, you will still have speech problems. AAC is hard to figure out. AAC will not make everything better, and I’m tired of people acting like it’s some magical thing that will. Will it make your life easier if you’re nonverbal or nonspeaking and NEED a way to communicate? Absolutely. But that doesn’t change the other shit.

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My therapist mentioned coping doesn’t always look pretty, it’s messy and half assed and it doesn’t look like movies or tv shows

Today I couldn’t sleep because I’m sick so I moved out of bed and turned on the tv and the heating blanket. Took some medicine, drank some water and kept reading my book. While gently reminding myself it’s ok to be anxious and it’s just a right now feeling not a forever feeling.

That’s what coping looks like today

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I think one of the hardest struggles of adhd for me is the lack of automaticity. Neurotypical people seem to be able to do things automatically. For them, get dressed consists of one step--get dressed.

But with adhd, it's hard to do things automatically because your brain is elsewhere, both consciously and subconsciously. "Getting dressed" isn't just one step, it's many. It's getting up, going to the closet, opening the closet, throwing the clothes on the bed, changing, put old clothes in the hamper, etc. etc.

And your brain can stop paying attention at any one of those steps. If you're not careful when you get up, you might go to the kitchen instead of the closet. If you're not paying attention, you might forget to put the old clothes in the hamper.

I think this is one of the reasons that compensating for unmedicated adhd is HIGHLY energy consuming. With anything you do, there are a million little micro steps where you can get derailed. I think this is why anxiety is often comorbid with adhd: it's one of the only conditions that forces you to always, always stress about what step you fucked up on.

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Remember that if talk or type weird all ok

Remember that if not low support need all ok

Remember that if not level 1 autism all ok

Remember that if nonverbal or semiverbal all ok

Remember that if cognitive function low all ok

Remember thay if dysfunctional all ok

Remember that if "more debilitating autism" all ok

Remember that disability ALWAYS debilitate one thing or another, if have "less accepted" autism still valid and deserving of love respect help

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It's not that I don't want to visit, it just wasn't on the list I made in my head

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I bring a sort of "can't read social cues" vibe to every social situation that I can't tell if anyone likes or not

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Autistics often have decreased autobiographical memory.

Autobiographical memory is an individual's personal history. Things such as where you went to school, how old you were when you learnt to ride a bike, what year you graduated etc.

Autistics have more difficulty recalling these memories at all, have fewer of these memories, or find that there are disjointed episodic memories (memories of the event occurring) but bad semantic memory (the ability to store and retrieve the memories).

This can lead to a difference in how we socially share our own history and narratives and our own social identity. Autobiographical memory is important in letting an individual understand their own experiences, social ties and place in a group.

Memories may take on a third person view rather than a first person view.

This may also lead to difficulties in being able to recall any specific emotions to the events that have occurred.

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turtleneck giraffe

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i will be autistic for a moment but living in a world where social expectations and standards are made by others and expected to be followed lest you be seen as a 'failed' person somehow when those standards are not based in personal happiness or autonomy or kindness to others makes me feel genuinely insane like daily

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Sometimes I see people on here who want to be good allies to nonverbal autistics, but at the same time don't understand nonverbal autism at its core.

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.

And for everything else I have some posts linked in my pinned post because I can't just participate in discussions.