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neurospicyyy · 4 months

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my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)

transcript: my frustration with “going nonverbal/nonspeaking” (as a fully nonverbal person)

this written for instagram because of this post. but thought tumblr may like it too. “you” means general you, no one specific.

the instagram post and this on wordpress

this disclaimer is for instagram but also for anyone new to this discussion:

in full honestly, don’t know how to write this. am tired, language and complex ideas too much at time of writing, and general exhaust at having to argue same thing over and over again and justify own existence. tired of being minority within minority, wish there are others to do these work for me so i don’t have to do it all by self, singlehandedly advocate for everyone (not to mention problem with that—i can’t speak for everyone).

so honestly, if you don’t have anything nice to say, especially if you speaking (yes, even if you lose speech. include you), just don't say anything at all. move on.

online actually autistic community (AAut) dominated by white, lower support needs. level 1, speaking, late diagnosed, high masking autistics. find people like you is great, what not great is you treat your very narrow community as “voice of all autistic” and your experience as ultimate autistic experience. i write plenty about that, many more elaborate than this, if you not familiar with this concept.

many people in this community experience times when cannot speak, sometimes because overwhelm, shutdown, dissociate, or anxiety (situational mutism), but do not struggle with act of speaking rest of time (some struggle with speech all the time but still can speak - more on that later). the community call “going nonverbal/nonspeaking,” or even “when i am nonverbal nonspeaking” (not talking about those nonverbal as child and verbal now older), after clinical term “nonverbal” (nonverbal autism) and term coined by apraxic nonspeaking autistics “nonspeaking.”

both of which talk about it as an “all the time” experience.

when i search nonverbal or nonspeaking because i want community too, want see people like me too, two category i see: 1) parents of nonverbal nonspeaking children, whom can’t relate to because age, who can’t write own experience because their age and developmental ability. and 2) overwhelming amount of speaking autistic talk about going nonverbal going nonspeaking.

and the very very few fully nonverbal nonspeaking voices. drowned out. cannot find anyone.

nonverbal used to be term to describe us, people who can’t speak or cannot functionally speak beyond few words. medical term, alright, so some of us don’t like. so some of us reject that and create term all of our own, called nonspeaking. created by nonspeaking autistics with severe apraxia and brain body disconnect, describe their own experience of able to think in words able to spell out words (with great dedication and work and support), just cannot do that with mouth. their term. they create.

and you take it? without knowing context? without reading anything by those same nonspeaking coiners?

when is last time you purposely seek out nonverbal nonspeaking voices? when is last time you accidentally came across us? can you name any nonverbal nonspeaking advocate that talk about their experiences? one? two? three? a BIPOC person, a (specifically) Black person? a Black woman? a trans person? a physically disabled person? a person not from western world?

same narrative over and over. “i can speak for nonverbal autistic i understand their experience because i am autistic i can’t talk sometimes” no you cannot. as someone who was able to speak when young who lose speech (”go nonverbal”) but now have no speech to lose because full time nonverbal. no the experience not the same. not comparable. you gain it back. i don’t. you can explain with mouth words what happen when you get out. i can’t, i only have AAC. countless nonverbal nonspeaking people without AAC or sign cannot, at all. you never experience daily small and big struggle of casually being nonverbal all the time.

your experience of lose speech unique from my nonverbal. but if you so insist to compare and equate, you only guest to my experience, my daily life.

“when i go nonverbal and no one understand so have to force to speak” i cannot force words out. know you don’t mean to say this, and not saying you at fault for this, but nevertheless accidental perpetuate and reinforce idea that anyone who don’t speak can just be forced to speak if try hard enough. but often not how it works. and this exact harmful rhetoric devoid and delays nonverbal nonspeaking people given access to AAC, because “need try to force words out first, AAC unnatural so last resort.”

this may be new concept for you. new concept to instagram, to tiktok. to other places. it may seem i only one with this problem, “i once saw a nonspeaking person’s account and they don’t have problem.”

yeah, because we are not monolith. some nonverbal nonspeaking people don’t care. some nonverbal nonspeaking people may even welcome “go nonverbal nonspeaking” or “when i am nonverbal nonspeaking.”

but don’t be fooled into believe i only one. have many nonverbal/nonspeaking and/or higher support needs friends on tumblr, who talk about this who have been saying this for years. *years*. years before i joined. i am not creator, i only bring message here, because many of us are too high support needs too disabled to do anything else. many of us only stay on our small corner of tumblr because it most peaceful, because at least some listen, because least hostile, because need to defend our experience against our own community the least. (but it happens less doesn’t mean it doesn’t happen, we still exhausted.) many of us only stay on our small corner of tumblr because that all we can handle, or because we not allowed or shouldn’t be on other social media because age or abilities or both.

i cannot handle conflict i do not do well and i shouldn’t be here. but if not me, who else? if i don’t do it, who else is going to?

some nonverbal nonspeaking people and parents of them may question, why you start debate about useless term when so many nonverbal nonspeaking people don’t even have access to communicate, real problems. to that i say i do those work too. and to that i say this is real problem too, because am autistic so online actually autistic community should also be my space too but it not. but it hostile. because am lonely because seeing yourself so crucial because don’t know anyone in person like me don’t have any friends in person like me, so i go online to find people like me and i cannot because no own term to search and what used to be term many people without similar experience insist they understand and can speak for me because they say we have similar experience. because this aloneness and the unique difficulty from being full time nonverbal and the struggle of future and the unique mistreatment from both outside but also inside community have drove me over edge many times and it is presence and knowing their presence of my tumblr nonverbal nonspeaking / higher support needs friends that gave me hope to stay. because so many people don’t listen and instead speak over. terminology only a symptom of problem. address roots, sure, but part of address roots is address symptoms.

‘well nonverbal people are never around” maybe it because you don’t make it welcome for us to join.

“fully nonverbal rare anyway” estimated 30% of us nonverbal nonspeaking, which this statistic probably only count those nonverbal since birth. even more are minimally speaking or without full functional communication, abilities limited to requests. sure, 30% still not majority. but significant amount never the less. speaking lower support needs autistic without intellectual disability not majority anyway too but your experience still deserve heard. ours too.

“see less nonverbal people because they don't have ability to communicate and use social media” yes, many nonverbal nonspeaking people not given access to communication (like AAC), forced to live in silence (because body language communication not enough alone!). silence from birth to teenage years, to adulthood, even until they die. some cannot understand social media or AAC because intellectual disability or cognitive ability. some not allowed on there because safety, some not allowed on because presumed incompetent and abused. all true. do you advocate for them too? or is it just talking point against me, pretend you care?

but not all of us, we exist. some of us thankfully supportive parents all along, parents given resources, us given resources, so we access to AAC since beginning. some of us became nonverbal later in life (which not same experience as those early in life, i acknowledge). some of us after years of forced silence, finally given access to AAC and can now communicate and advocate! some of us on social media - do you listen?

but you see none of us in your community anyway. maybe one token person.

you can go nonverbal. i cannot go verbal. see difference? you can come close to my experience, but i never will have (future) ability to go to yours.

it frustrate that have to specify am nonverbal **all the time** when write this, because if don’t do that will be assumed otherwise. frustrate that when in neurodivergent space stranger see me AAC they assume i can speak because they only know part time users (know part time users frustrate too because people assume they cannot speak and get surprised when they do. me being assumed automatic part time is not fault of part time AAC users.)

even been told am privileged to be nonverbal nonspeaking, privilege over speaking autistic who lose speech because in their mind it mean i get all support i need i get all recognition get all the representation. which. couldn’t be farther from truth.

all that. is fraction of reason i frustrate at “going nonverbal nonspeaking” and “when i was nonverbal nonspeaking.”

so many other words. lose speech. intermittent speech.

just want have own sub community where can find people similar experience.

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neurospicyyy · 4 months

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Neurodivergent-themed dividers ❤️ No credit needed, but please do not claim as your own!

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neurospicyyy · 5 months

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For a more short term goal, I need about $130 to afford a wheelchair for myself. I have chronic body pain and walking long distances is excruciating for me.

CA: $trntlisle

PP: (note: "for wheelchair")

Chair link:

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neurospicyyy · 5 months

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Absolutely!

i think a lot of people miss out on this but spending time with diverse groups of disabled people makes you realize that people's needs will constantly contradict each other. if one person stims, tics, speaks, breathes, etc. loudly, then there will be at least one other person who can’t stand the sound of it. they need to be able to leave if they need it. the loud person cannot be forced to stop being loud but the one who is sensitive to loudness cannot be forced to tolerate something they can’t either. maybe there’s a person who needs aromatherapy to cope with or reduce problems that their disability causes them. but there may also be a person who gets seizures or migraines from strong scents. you cannot deny that coping skill but you cannot let it trigger someone either. someone who struggles to sit might need a standing desk, someone who needs to sit will need a chair, some people might need alternative seating or flexible seating, and all of those options need to be available. one standing desk in the corner isn’t going to cut it most of the time and people need to be able to accept that and do better.

i could give endless examples of times when people's needs will contradict each other. most of which i’ve seen happen in real life spaces. physical, processing, communicating, everything can be contradictory to someone else's need. everything. a truly accessible space will try to accommodate to all those who exist within it.

#True #real #fr #neurodivergence #disabilities #neurodivergent

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neurospicyyy · 5 months

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Love this!

I’d like to add:

Stutters can happen whenever, not just under high stress. It depends on the stutter. Not all stutters are the same.

Stutters can also be more intense/frequent when someone is excited, happy, hyper, etc. Not just in stressful situations.

In certain areas of the world, a stutter may also be called a stammer.

For some people, their speech becomes more fluent after a few drinks. So if your character is drinking alcohol, just keep that in mind. Alcohol does affect stutters in different ways, so it’s really up to you to decide whether or not they stutter less while drinking. (Self medicating with alcohol is not recommended btw)

how would you properly write dialogue for a character with a stutter? ranging from a barely noticeable one to a very extreme one. thanks!

How to Write Dialogue for a Stuttering Character

@brynwrites made an excellent post about this that I found while researching and it can be found here. It's a long post but it goes way more in depth than I did.

Types of Stutters:

Repetition of certain sounds: “Li-li-like this” or “Like-like-like this.”

Prolongations: “Llllllllike this.”

Blocks: “L—ike this.”

Rules for Stuttering: (This is mostly for block stuttering, but many apply to other types of stuttering as well. provided by this article)

Stuttering occurs on the first sound of the word. It will not occur mid word or on the first full syllable. (s...s-ample. NOT sam...sam-ple)

Do not write a stutter more than once in a single sentence or three times in a single paragraph. If the scene is a high-stress situation, you might be able to get away with it, but your readers do not want to read block paragraphs of stuttering.

Choose 3-7 sounds for your character to struggle with. People tend to get blocks on particular sounds. For example, b, p, k, w, g...)

Use another synonym for the word they are struggling with. Example: "You look g...g... really pretty."

Don't have your character stutter in every conversation. Under high stress, the stutter will be more frequent, under low stress they may not stutter at all.

If you use the dialogue tag, "he stuttered," do not write the stutter in the quote. If the character is stuttering in their sentence, you don't need to write out the fact that they were stuttering.

Do not write a stutter in thoughts. People with a stutter do not stutter in their thoughts. Just don't do this. It's unrealistic and insulting.

#writing tips #neurodivergent #stuttering #stutter #stammering #stammer #writing advice #neurodiversity #writer #writeblr

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neurospicyyy · 5 months

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Normalize stuffed animals!

Stuffed animals are awesome! Everyone should be able to carry a stuffed animal around.

Here’s why:

1. Stuffed animals help provide a sense of familiarity

For some people, changes in environment or routine can be really overwhelming, sometimes to the point of causing physical pain. Having a sweet little stuffed animal as a constant variable, even just in daily life, can keep things less stressful. We can always count on our stuffie(s) to be there for us, even in the hardest of times!

2. Stuffed animals reduce loneliness

It’s pretty easy to anthropomorphize any object, but with a stuffed animal, it’s even easier! Stuffed animals are already designed to resemble living creatures. Just add an element of human imagination, and you’ve got a cuddly companion to ease your loneliness.

3. Stuffed animals provide a sensory experience

Isn’t it fun to squish stuffed animals? Stuffed animals come in all kinds of squishyness & textures, meaning you can pet that uniquely textured fabric, or squish their oh-so-squishable belly. Stuffed animals can be tons of sensory fun!

4. Stuffed animals won’t judge or ask for favors

Stuffed animals aren’t going to ask you for money, or make you spend extra time with them, or force you to go shopping. With stuffed animals, you are in charge. They’re never going to judge you for being different or making a mistake. They’ll just happily do what you’re doing, no questions asked. Plus, they’re always great listeners!

Normalize stuffed animals and carry yours around with pride! ❤️

#stuffed animals #neurodiversity #neurodivergence #anxiety #adhd #ocd #autism #actually ocd #actually adhd #neurodivergent #neurospicyyy talks #neuroawareness #normalize stuffed animals #normalize it #fuzzy

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neurospicyyy · 5 months

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Ways to Help an Autistic Person Who is Struggling

I CAN Network Ltd

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neurospicyyy · 5 months

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Neuroforecast || December 2023

#neuroforecast #neurodivergence #neurodivergent #neurodivergent polls #neurodiversity #actually adhd #adhd #neurospicy #actually ocd #ocd #tumblr polls #tw all caps #2023 #december #neurodiverse stuff #actually neurodivergent #nuerodivergent #diagnosis

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neurospicyyy · 5 months

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ADHD pro tip: Use psychological warfare on yourself.

For example, in order to do long tasks, like folding laundry, I put on the Mario Hat:

The main feature of the Mario hat is that my headset does not fit over it, so when The Bees™ try to put me back in front of the screen, the headset issue forces me to remember why I put the Mario hat on, and back to the task I go

As a bonus, the Mario hat is also a very clear indicator to my housemates that business is getting done, and they have learned not to distract me when I'm wearing the "goofy-ass cosplay hat"

It's not stupid if it works.

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neurospicyyy · 5 months

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I’m just going to give a quick shout out to any neurodivergents who don’t have ADHD or autism.

You’re still valid if you:

Are dyslexic

Have aphantasia

Have synaesthesia

Have OCD

Have alexithymia

Are dysgraphic

Are dyscalculic

Have tourette syndrome

Are bipolar

Have a personality disorder

Have anxiety

Have an intellectual disability

Have down syndrome

Or more!

The jury might technically be out on a few of these, but if your condition affects your way of thinking and comes with a strong sense of identity, you are completely justified in calling yourself neurodivergent. Nobody should judge you for it.

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neurospicyyy · 5 months

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Hey, I wanted to take a moment to share with you something that has transformed my life. I believe that we were all created with a purpose, and that purpose is to know and love Jesus. He loves us unconditionally and desires to have a personal relationship with each one of us.

Now, I understand that not everyone believes in God, and that's okay. But for me, knowing and following Him has brought me a sense of peace and fulfilment that I never knew was possible. If you want to know more, there are so many people out there who you can ask. I promise, it is worth it. Thanks for taking the time to read this!

By the way, when I send you this, I am not being hateful at all! I'm a queer, neurodivergent, disabled poc, I do this because I want everyone to hear this - it is amazing.

That’s awesome! I’m glad you are able to find strength in your faith. I’m an agnostic atheist (who grew up in a Christian household) but I completely respect and support you theists!

One thing though: religion, especially Christianity & Jesus, can be quite a triggering topic for some people, as religion is quite widespread and occasionally interpreted as a way to justify and endorse cruel actions. Fortunately, I don’t have a bad past with religion, (just realized it wasn’t for me) but some people do, so please remember that the next time you send people religious-based asks!

Anyway, thanks for the ask! I appreciate that you shared this with me and I hope your faith in God remains strong! All my love! <3

#tw religion #tw christianity #cw religion #tw jesus #neurospicyyy’s unrelated #anon ask #answered asks #cw christianity

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neurospicyyy · 5 months

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can you modify pinned post? screen readers can't read it

Oo thanks for telling me! I made a new one that should hopefully read better!

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neurospicyyy · 5 months

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𐃘 Heyyy it’s Jay! - she/her

Nebularose & cisgender

Officially diagnosed with adhd, ocd, and anxiety

• This blog talks about neurodivergence!

• Still relatively new to Tumblr

• Spends time browsing the internet.

• Into multiple fandoms (toh, dnd, atla)

• This is a side blog. No, you’re not getting my main.

𐃘 Tagging system (additional tags may be added)

#neurospicyyy talks - talking about neurodivergence #neurospicyyy resources - containing resources for neurodivergents & pw disorders #neurospicyyy polls - polls for neurodiversity/about neurodiversity- includes neuroforecasts #neuroforecast - specifically neuroforecast polls (where the opinions of neurodivergents are recorded using the format of a weather forecast) #neuroevent - An event hosted to celebrate and educate about neurodiversity. I’ll make some of these in the future, hopefully?

#neuroawareness - Common problems us neurodivergents face and how people can support us (mostly targeted at neurotypicals) #neurospicyyy reblogs - reblogs of other people’s posts (related to neurodivergence)

#neurospicyyy asks - posts answering asks and messages from my mailbox #neurospicyyy’s unrelated - posts unrelated to neurodivergence

“Stumble in, fight the spin If you don't, you're falling on your face again”

I believe that everyone should have access to neurodivergency resources, no matter what my feelings are towards them. That being said, there are some people I just can’t handle. So…

𐃘 DNI if:

Knowingly and purposefully ableist or racist

Transabled, transautistic, or transadhd

Inappropriate or triggering username/profile picture (no explanation needed, really)

Other than that, feel free to interact! As long as you aren’t starting discourse or harassing other people, I should have no problem with you being here.

#pinned post #pinned info #introductory post #blog intro #pinned intro #pinned bios #actually adhd #adhd #neurodivergent #neurodivergence #neurospicy #neurodiversity #actually ocd #ocd #purple aesthetic

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