#AAC written post

[masked-lullaby]

Nudibranch for AAC! This lovely creature is a sea sheep, scientific name Costasiella Kuroshimae.

Pastry Love it! So yay and adorable ! /positive

Pastry added to AAC ! /positive /information

sea sheep is a Nudibranch ! /positive

Pastry added the many names

[dreamdropsystem]

there's many forms of nonverbal communication, not just a AAC app, there's text to speech apps, sign language, communication cards, communication boards, gestures, letter boards, written communication, etc etc

[tontoemojis]

Using TTS because it's easier for us but not being able to find and use cool pictures is gonna be the death of me anyway uh

Do you prefer a small or big grid?

We do prefer a smaller grid size , we like having more words in our home board !

We also feel you on the first paragraph , as we also use a text to speech app . It does not let us add images with transparent background as it turns them black !!! , It is a shame . It is a great app too .

[autisticdreamdrop]

this is a post about nonverbal communication.

we have plenty of semi/nonverbal alters and many members in our system go nonverbal/semiverbal

nonverbal communication is valid and should be talked about more.

some days you can't talk for a period of time and or all day and that's okay. some autistics don't like verbal spoken communication all the time, some autistics hate the way they speak/sound. some can't talk when they're scared or overwhelmed or excited etc. some autistics deal with selective mutism. and that's okay.

not all communication has to be verbally through your mouth parts. there are other ways to communicate. like what we talk about in this post. this world is speech obsessed and that needs to change

in our system we use a lot of nonverbal communication. we are trying to learn ASL, we have an digital AAC we use IRL but lots of alters use AACs in headspace. digital AACs, text to speech, communication cards, stimming, ASL, etc etc.

we're starting/trying/learning to use them all when we can but mainly we use a high tech AAC or text to speech and stimming. we're working on gestures, written word, sign language and communication cards.

what forms of nonverbal communication do you use? something we didn't mention in the post? feel free to comment in the notes

a lot of alters works on this and we're proud of it. we really like making these posts.

- 🎀Dreamdrop System 🎀

[stories-by-starlight]

Realize, at appointment yesterday, that autism catatonia had been big part our lives for over 1/3 of our life so far. Realization hurt, hadn’t notice how long it been until doctor pointed it out to us.

We developed autism catatonia when body was around 11/12 years old, not long after traumatic event in our lives. Though wasn’t able get diagnosed until years later.

It made life really hard. Everything always got harder, and became really isolated really fast due to everything happening.

Feel anger, when think about it. Try not to be angry, most times, but feel anger when realize how much time lost to this. Just want it to be over. Tired of losing and losing and losing.

Honest, hope not many relate. But for people who relate, hope know you not alone. Thank you if read all this, sorry it’s not very positive. Hope today is a good day for everyone.

[tobytalksaac]

Toby is ashamed. Toby have Headmate who make them own blog. Headmate nice but system not agree with some opinion Headmate have. Toby nervous about digital footprint. Dad always talk about internet safety when younger so Toby always very terrified of not be safe and Toby have panic attack because scared and felt that was mean because Headmate just existing and that scares Toby.

[five-thousand-loaves-of-bread]

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.

[zebulontheplanet]

Hi everyone, as you know, I’ve been on a hiatus. Lots has happened. Some of this was written over weeks, so things might be split up or written differently.

For the new followers that followed me within that time, hello! I’m Zeb. This is going to be a long post, and I’m sorry but I need to say a lot.

On March 22nd, I went into a verbal shutdown for no apparent reason and haven’t been able to speak since. It’s been awhile, and I haven’t been able to really utter more than two or three words.

Do I know if my speech will come back? I don’t know. Do I know if it’ll stay this way? I don’t know. I don’t know anything.

I’m mute. I cannot speak. No, I did not come to this lightly, no I’m not making this up for clout. I have no reason to make something like this up. I am grieving for losing my speech. Being newly mute is hard. My life has drastically changed. From how my family treats me, to how society treats me. I’ve had to learn new things on how to navigate the world. I’ve had to learn how to talk to doctors using my AAC, I’ve had to learn how to make phone calls using my AAC, I’ve had to learn how to navigate life in a new way. That’s hard.

I am thankful that my family is incredibly supportive. At first, we thought it was burnout or stress. We thought I’d come out of it. I thought I’d come out of it. I haven’t though and that’s hard too.

People around me say not to worry. “Verbal shutdowns can last months, years, they’re still verbal shutdowns”. I’m not personally showing any improvements. I’m not showing any signs that I’m going to speak anytime soon.

I’ve had to adjust my whole life to my now lack of speech. I’ve had to adapt. See the world in new ways and do new things. My life has changed, and my life has turned into that of someone who is mute, because I am mute. I can’t talk. I can’t even sing. The best way I can describe it is that there is a wall between me and my words that I can no longer get past. I’m mute.

I grieve for my voice, and I took my hiatus to grieve for it and seek medical help. I grieve for the life I could have had, for the life I did have. I grieve for what my life will look like, what my new challenges will be. I grieve for that.

I have autism regression and catatonia. I knew for awhile that my speech was deteriorating and I could do nothing about it. I thought maybe I’d just be on the lower verbal side of Semiverbal. Not in a million years did I think it’d come to me being fully mute. I didn’t expect that. I don’t want to be mute. I wish I could talk more then anything. I wish I could talk to my partner, to my parents, to my sisters, to everyone! I wish I could sing. I wish I could do all these things but I can’t. That hurts.

Went to a neurologist and was marked as having “psychogenic mutism”. Don’t know if I believe this. Don’t know if it’s psychogenic or catatonia. I don’t know, and I don’t know if I’ll ever know.

I have been exploring other terms for my lack of verbality, and I will continue exploring them and learning from those around me.

My life has changed so much, and I hope I can bring you along for this whole journey, and tell you what you have missed.

[birdofmay]

Talking about a discourse that doesn't even exist on Tumblr

On Tumblr, us higher support needs nonverbal/nonspeaking people often had 2 possible scenarios to deal with:

1. People ignore us and our opinion because our writing isn't "proper" English, and they make fun of us or comment on our writing style.

2. People think we're faking because our writing is good.

I couldn't care less about scenario number 2. And luckily I'm not affected by scenario number 1.

But what happens now is that somebody tries to discuss a Twitter discourse that simply doesn't exist here on Tumblr: Nonverbal/nonspeaking people with severe or profound autism and/or severe or profound intellectual disability who use FC to run their blogs.

This isn't happening.

Nobody on here (except maybe 1 person, but even there I'm not sure) has profound autism. Severe yes, there are some. But we don't use FC to run our blogs. Nobody on here (except maybe 1 person) has a profound ID. Severe yeah, maybe. But most people with ID are mild or moderate. And none of them use FC to run their blog.

So what happens now is scenario number 3:

3. People (or rather 1 online troll) think that what we write is facilitated and not our own words.

Especially those of us who have severe autism and/or ID. This is worse than scenario number 1 or 2. Especially because there's no way to disprove it. The better our grammar, the higher the probability that somebody else wrote our posts; at least to this online troll.

So whenever you encounter someone who says that what we write is facilitated and/or written by someone else: Don't believe them. Yes, sometimes people write something for us, but we can always check if we agree with what's been written.

I've heard of the FC problem where caregivers wrote something for the nonverbal/nonspeaking person, and it always was about how great FC was, etc. I think this was on Twitter and on individual blogs somewhere on the internet. But this isn't happening on Tumblr. Nobody with severe autism and/or severe or profound ID uses FC to run their blog on Tumblr.

It's basically "Yelling into the void".

Edit:

Since this post reached people who aren't aware of what was going on lately:

FC is short for Facilitated Communication. It's a method for people who can't speak and struggle greatly with other communication methods, such as writing, signing, or using an AAC device.

There's nothing wrong with people helping someone to run their blog; I, too, sometimes need help to run my blog. There's also nothing wrong with people writing posts or messages for someone. This post was only to inform others that nobody on Tumblr uses FC full time to run their blog. Because this is what this troll believes. She basically complains about something that's not the case.

[howtocareforbunnyboys]

Communicating with smalls who can't speak right now

To clarify: this post is written for carers of age regressors who experience temporary loss of speech from time to time. My small one sometimes regresses too small to speak, and when he's big, overstimulation can also cause a verbal shutdown.

This post is written by an autistic person with autistic friends, family, and an autistic partner, but it is not about nonverbal autistic people. I'm not nonverbal, and neither are any of my close friends or family members, so I lack the adequate experience to know how to accommodate someone who does not process words the same way as someone who can verbalize.

Outline:

What to ask? (Help for how to proceed, written with non-autistic carers in mind)

Leeloo AAC app (method)

Option chart (method)

Sign language (method)

Understanding sensory management

🌷 🪻 🌻 🪻 🌷

What to ask: (Autistic triage, lol)

If your small one is overstimulated, then the first step is to determine what is causing irritation.

"Are you overstimulated?" Can work for older kids, but "is everything too much?" May work better for younger regressors. Similarly, "is everything too quiet?" Is a great way to ask if they're understimulated.

"Do you know what the problem is?" Opens the door for them to point to the problem, cover their eyes/ears, or tug on their clothes.

If they answer no, start removing stimuli and asking if it's better. E.g., dim the light and ask "is it better with the light low?" If they indicate yes, repeat question 1. If they indicate no, ask if they want the light back up.

If there's still a problem and it's not external, it's probably an internal stimulus. They may be hungry, thirsty, or need to use the restroom. They may need to switch positions, stretch their limbs, or treat a minor injury. They may feel nauseated, have dry eyes, or need a shower. Interoception can be really hard for autistic people, and any of these stimuli can register as just pain, distress, discomfort, or overstimulation, without a clear source.

I know the options for possible sources for overstimulation is seemingly endless, and being asked questions can itself be overstimulating. You can reduce this problem by identifying for yourself the most likely triggers. For example, if your small just had a meal 20 minutes ago, then hunger probably isn't the culprit. If the noise level in the room (and coming in from the doors and windows) is already low, that's probably not the main problem.

You can also ask some questions silently, by offering them helpful objects (noise-canceling headphones, fidget toys, their phone, blankets, plushies, beverages, etc.)

Lastly, it's important to know that when overstimulation leads to a shutdown or meltdown, it's rarely due to one cause. It's because there's just too much going on all at once. It's not "the light is too bright," it's "the light is too bright, my clothes are uncomfortable, there is a small beeping noise, I'm getting a headache, and I'm carrying stress from events that happened earlier today."

Because it's a cumulative effect, removing some of the irritants (and adding soothing stimuli) can be enough to start to return the person to baseline.

As they approach baseline, they'll be able to think better, and may start to be able to identify problems on their own. For example, when the sharpest lights and noises are blocked and their body is at the right temperature, they may be able to identify "oh, I'm thirsty!" and request a beverage (with gestures, writing, typing, etc).

As they approach baseline, they may be able to verbalize again, or they may still need a break from speaking. The process of your body moving from a high-stress state to a low-stress state takes time. Your body has to filter out all those stress hormones, and build back up the feel-good hormones.

It can be that nothing is actively wrong anymore at that exact moment, but they need some quiet time with their favorite media to rest and recover.

🌷 🪻 🌻 🪻 🌷

Leeloo AAC

If they can still type, the app Leeloo is a free, albeit limited, AAC program.

[Link to Leeloo AAC via Google Play]

Pros:

Mostly free

Can read aloud what you type (TTS)

Has pre-programmed words with pictures in some categories

Cute aesthetic geared towards children

Cons:

Can't add your own words and pictures

Some categories are behind a paywall

Can't record your own pronunciations

For regressors who are old enough to type, this is a great resource.

For regressors who are younger, the limited number of programmed images & words may be a problem.

🌷 🪻 🌻 🪻 🌷

Option chart

The above image shows two ways to show your small options, which they can select through pointing or placing their hand on top of the desired option.

Above the orange line is for yes/no questions. I find that when Bunny is too overstimulated to speak, his needs are often too complex to put into a simple nod or head shake, so an "other" option is essential.

Placing "other" in the center also allows him to point between two options to indicate "yes, but I need accommodations" or "this is similar to what I need, but not quite".

Below the orange line are 3 symbols 🤎🏵⭐️. The specific symbols used don't really matter; I just drew a heart, a flower, and a star because they're simple shapes every kid has seen a thousand times, so it's not difficult visual stimuli for the small one to process.

While you draw the symbols, you explain to them what the options are. After the first question, you can either turn the page to make new symbols, or you can reset the meaning of the same symbols.

If the regressor struggles with resetting the meaning, but you don't want to draw a new set every time, then try just drawing 2-3 sets and switching sets between questions.

You can also place 3 toys in front of the regressor for them to grasp, if they don't respond as well to requests for pointing. This method is excellent for very, very young regressors that struggle to read.

Accommodations for blind / visually impaired regressors :

You can still use the option chart method, of course. You can guide their hand to 3 different, familiar objects, or verbally inform them what you're placing in front of them. It's important that the objects are very different, so they can find and pick up (for example) the cold, metallic spoon, or soft plushie, or smooth stone without confusion.

If you have permission to touch their body, you can assign meaning to different body parts, e.g. right shoulder for yes, left shoulder for no, knee for "maybe/kinda", top of head for "I don't know".

I specify "if you have permission to touch" because verbally indicating body parts will involve the possible factor of right/left confusion. A regressed person may temporarily lose the ability to tell right from left, but if you touch each shoulder, they're likely to be able to remember which shoulder means "yes" and which means "no".

🌷 🪻 🌻 🪻 🌷

Sign Language

I don't think I need to explain this one.

Pros:

Gain the ability to communicate better with more people in your local Deaf community

Gain the ability to communicate with noise-canceling headphones on, thereby reducing your level of auditory stimulation 🎧

Can listen to music and talk at the same time 🎶

Can talk in libraries 📚

Can talk in loud places like buses and trains without wanting to fly out of your skin. 🚌 🚂

Gain the security of knowing that as you age, if you start to lose your hearing, you'll still be able to communicate. 👵🧓👴

Cons:

For many reasons, it's best to learn directly from a Deaf teacher, and that costs money. If you have $10 USD spare per week and access to reliable transportation, you can probably join a beginner class held by your local Deaf resource center without any issues, but not everyone has those things. There are also courses held online, but please try to find one that teaches your regional sign language. (Learning ASL with a San Francisco accent when you live in NYC is perhaps a bit odd, but not as bad as learning sign language from a whole different country.)

It takes a lot of time to learn another language, so you'll still need a different method in the meantime.

🌷 🪻 🌻 🪻 🌷

Understanding sensory management

This is probably obvious, but when you're autistic, a great deal of effort goes into curating your sensory input. Speaking as a city-dweller, we live in a loud, stinky, bright, ugly, stressful, uncomfortable world, and we can't change that.

Arranging your schedule/routine to include regular bursts of comfort and happiness, and reducing irritants where possible, is necessary self-care for an autistic person. Disruption to these processes is distressing because we really rely on these skills to manage the uncomfortable world.

[Example] : "I always watch ____ and eat ____ on my lunch break." = Going out to lunch with a friendly coworker will mean giving up my restful time, adding a whole lot of unanticipated stressors, and require conversation during a vital time I use for quiet relaxation. This is how I get through my work day.

[Example] : "I only eat this brand of [food item] and wear [specific clothing type/brand/fabric]. I am upset if this is unavailable." = I know what feels good in my mouth and tastes good, and I know what feels good on my body. Eating/drinking these things gives me a reliable burst of comfort and happiness. Wearing these things gives me a steady stream of reliable comfort/happiness throughout the day.

You can probably think of a point in your life when you were going through a difficult, emotional time, and you were taking things day by day, hour by hour. You got through work 15 minutes at a time, counting down til your next break. You spent your break doing something comforting. Maybe you avoided watching the news and avoided stressful family members.

You probably felt more irritable than usual when the grocery store radio plays a song you dislike, or your shopping cart has a squeaky wheel, or your watchband keeps catching on your arm hair, or the cashier looks like they're judging the nutritional content of your purchases and is considering making a bad joke. Normally, you'd filter out these mundane annoyances, but now they set your teeth on edge.

Maybe there was only one thing you looked forward to each day, like a little oasis. And if something went wrong with that precious thing, then everything you've been trying to keep inside would come spilling out in jagged breaths and hot tears spilling down your red, embarrassed face.

Recalling all this, you might notice that during those difficult, emotional times, non-autistic people use the same skills as we do --- limit stressors, and increase opportunities for comfort and happiness.

You do this naturally for others, already!

When your loved one is in mourning, what do you do for them? You limit stressors (clean their house, do their laundry, run errands for them, etc). You increase their comfort and happiness (give them gifts, make them their favorite foods, take them out to see their favorite sports team/movie franchise, etc).

Why does grieving require similar skills to daily life with autism, even though being autistic can be a joyful experience?

Autistic brains interpret sensory information differently than allistic (non-autistic) brains. We struggle to filter out unimportant stimuli, and we notice fine details, which means there is a LOT of stimuli. We just experience a "louder" external world than allistic people do.

When allistic people are in a heightened emotional state, they temporarily lose the capacity to filter out stimuli. This means that, for a time, they're experiencing a very loud internal world (from the heightened emotion) and a louder than usual external world all at the same time.

So when your autistic loved one freaks out about something you interpret as unimportant, please keep in mind that whatever it is, it's something that is important to them. It's something they were relying on, and looking forward to. The world is so, so loud. We need our reliable comfort and happiness. We need our rest and relaxation, (even if that rest and relaxation is achieved via jumping, spinning, dancing, singing, or making specific noises).

Thanks for reading :). I hope this gave you (and your small) something to discuss or try.

[masked-lullaby]

Do you have a favorite My Little Pony character?

Pastry favorite is Fluttershy and Pinkie Pie for friendship is magic .

background pony is Derpy Hooves

past generations is Minty and Posey

favorite villain is Chrysalis

[perplexingluciddreams]

An average day in my life

I want to make a post about an average day in my life, with higher support needs nonverbal autism (with continued late regression), severe ME/CFS, low mobility, hypotonia, and other health things. I need a lot of help with most things, and due to my conditions my everyday life probably looks quite different than many people's.

I tried to write this several times. I started with AAC, but I couldn’t see what I just wrote, so I got lost and jumped about too much. This time I made myself some questions to answer, so I can still use AAC to help with the words, but not get so mixed up. Some of this is written with AAC, some is typed.

Where do I spend most of my time? How do I spend most of my time?

I spend the large majority of my time in my bedroom, and the most of that time is spent in bed.

In bed, the things I do is: watch DVDs or other things on laptop, edit AAC, practice/write with AAC, play games on phone, listen to music.

When I am not in bed, I am listening to loud music in my swing! Best way of regulation for me, keeps me calm.

What does my bedroom look like, how do I have things set up?

I sit up in bed with a big wedge pillow and two normal pillows behind me. I usually have my laptop, iPad, AAC device, DVDs and DVD player, and fidget toys (dummy, chewy, tangle) on the bed with me. I also have an overbed table which always has my glasses and case and juice bottle on it. I change around what is on the table depending on what I am doing at that time.

My LED lights in bedroom is usually on orange or yellow colour, with lights fairly dim. The curtains and blackout blind is always closed.

I have a fan and book light always next to my bed. I have a weighted blanket as my duvet, with five other varying types of blankets on top of it.

What are the other activities I do?

I have some other activities I occasionally do with help and prompts. Sometimes I go downstairs (with stairlift) to watch TV and/or do walking (physiotherapy, walking back and forth with or without AFO braces). I also do walking upstairs, because getting downstairs is a real challenge.

I rarely remember that I have options other than the things I see in front of me, so my parents have to give me choices.

Occasionally Mum ask me if I want to play cards, or do something else not normally do. It depends on how I feel and how loud my brain is, but sometimes I say yes.

What are the few things I can do independently on a daily basis?

I can put shoes and socks on, and take off, by myself! Only with same pair of stretchy shoes, just pull on. I do this several times a day because I wear shoes in swing, but not in bed. So it is a strong motor path.

I can change my hoodie/take it on and off by myself.

I can go between my bed and swing by myself, no prompt. I can walk to go to the toilet and change nappy (diaper) by myself.

I can brush my teeth as long as my toothbrush and toothpaste is brought to me. Sometimes I also need a reminder, or I forget. I am more likely to forget in the evening. I remember better in the morning because I don’t like the taste of my own mouth.

I can drink from my juice bottle and feed myself.

I can put DVDs in and out of DVD player and plug it into laptop. I can choose what I want to watch on a few streaming services. I can navigate a few social media apps, and can even post/message on a couple.

I can use the two different remotes to control my LED lights and sensory light projector.

What is my main struggles and difficulties in an average day?

I can't do much without prompts so these two things (bed and swing) is basically all I can do on my own (I can also go to the toilet without a prompt most of the time, but sometimes I get stuck). I struggle to initiate tasks and transition between tasks. I also can only make my body go on strong motor paths (movement sequences that I do over and over that is strong in my muscle memory), and there is only space in my brain capacity for a small amount of these motor paths at a time. Learning a new motor path and making it strong can make me lose a previous motor path (usually whichever is weakest at that time). This is very limiting.

Even with the pillows I have, it is not enough support. My body is too weak and floppy. My posture is bad and I slide/slump down so I am closer to a lying down position than sitting. I am always in a lot of pain, so I shift around a lot trying to get comfy, but it is never quite right. This is even more for when I sit in swing (or anywhere else), there is next-to-none support there.

If I could, I would be in my swing all the time! But unfortunately I have very low energy due to ME/CFS so a lot of rest is necessary. I find this hard because I need to stim and regulate constantly.

It is necessary that I spend much time alone in my room. If I didn’t, the smallest things would send me into immediate shutdown or meltdown. I can’t be around people much at all, even voices noises is too much. Usually I am only around people for the time when they help me with something, or bring me something.

When I do be around people, even with AAC it is very very difficult for me to communicate - I can do a handful of simple signs but anything more complex is so hard to get out that it usually has to happen when I am on my own in my room (like when I write a post like this). I am sad that I can’t have important or deep conversations with a person in the same room. Most of the important things I communicate to Mum is through Tumblr or WhatsApp.

I am oversensitive to so many things because of sensory issues. I am always dysregulated and I spend so much time trying to keep myself calm with swinging, with out making my health worse.

Often I am much too tired and sore to go downstairs so I am stuck in my bedroom most of the time.

I don't feel many body signals, like my bladder. When I don’t feel the signals at all (or not until too late), combined with getting stuck and not able to initiate go to toilet fast enough, I have accidents. This used to be something I could just about keep on top of, but with regression I no longer can manage it, so I have to wear nappies (diapers). This also adds another task (change nappy) that I have to use my limited brain capacity to learn and hold onto.

I am so fatigued and in pain from doing small things, and my body response to fatigue is often a big trigger for many sensory issues. This often becomes a downward spiral of fatigue response -> sensory bad -> big stim to calm down -> stim makes fatigue worse -> more body fatigue response, etc.

What is my morning routine like?

The first thing that happens in the morning (approximately 9am) is Mum or Dad comes to my bedroom with breakfast and medication. They help prop me up in bed with a big wedge pillow, and two normal pillow behind me. They give me my headphones (I wear almost all day, every day) and help put all my things around me on the bed. They also give me my toothbrush and toothpaste. In the mornings I can’t communicate much at all (only occasionally a few signs), can’t look at another person or do anything that would overwhelm me even a wee bit. It would cause immediate shutdown or meltdown. Shutdown is more likely for the morning time.

What is my mealtime routine like?

Mum or Dad (or very occasionally sister) brings me my food, and if it is a messy food then I put a tea towel over my chest so I don’t get covered in food. I eat while watching something usually, because I need the distraction to not get so stuck. Every time I get new meal or snack brought upstairs to me, I get a fresh bottle of juice also. The bottle is approximately 450ml, and I have 3 meals plus 2 snacks each day. I also get a bottle of water (not juice) brought up with evening meds, so I don’t get sugar on my teeth after I brush them.

I eat the same snacks at the same times every day. I have the same exact breakfast every day, and it has barely changed since I was quite young. I have two lunches, it is the same except for sandwich filling - I eat one for weekdays, one for weekends. Dinner varies, but there is still a predictable amount of choices, and often I eat the same dinner for the same day of the week. Mum sometimes tells me what is for dinner, if it will be different than the usual dinner for that day of the week, or if I ask. But I usually forget by dinner time anyway! 🤷🏻‍♂️

What is my bath time routine like?

With bath, Mum always helps. I need a lot of prompts. I get confused and lost with all the steps. But I have gotten better with practice, and each step have a stronger motor path now. I need Mum to tell me what part comes next.

I use a bath lift to get in and out of the bath.

I can do the physical washing part mostly on my own, sometimes I ask for help with my back. Mum gives verbal prompts and puts the right soap/shampoo in my hand or on washcloth.

Sometimes even with prompts, my brain confuses the steps or the motor paths, and my body does the wrong thing. This happens more recently, because when there is a complex sequence of separate (at least it is stored separately in my brain) motor paths, I can go into “loops” of do same thing over and over. Or my wires get crossed and I simply do the wrong movements.

I can also mostly dry myself (I sit on toilet seat to do it), but Mum always does my back. I can’t dress myself, so once I put on nappy by myself, Mum puts my top on. Then I walk to bedroom and Mum puts my trousers on while I sit on the edge of my bed (it is a better height that sitting on the toilet seat). Then Mum opens deodorant and clicks it up, I put it on myself.

What is my evening/bedtime routine like?

I have poor sleep, usually, and a really weird sleep schedule! My parents go to bed at approximately 10pm (sometimes Mum a bit earlier), and Dad always comes in to tell me goodnight. But I am awake much much after that (usually between 1-3am is when I finally go to bed for sleep). Sometimes I still swing when my parents is in bed, but I try not to swing too late because it can click and make noises.

I stay up and watch things, or play games on phone and listen to music. I often get stuck and cannot transition to go to bed, so I force myself awake for long after I could probably already go to bed.

When I finally manage to force myself to do the bedtime routine (or when my body is so tired it force me), I have to move all the things off the bed (some go on overbed table, some go to charge on the other side of the room). I also then change hoodie from day hoodie to sleep hoodie. I also move big wedge cushion and extra pillow down onto the floor. And put special cushion under my sleep pillow so it is at the perfect angle. Then, finally, I can lie down.

Sometimes I still go on my phone after that, usually to read fanfiction, if I can’t relax enough yet. I also rock back and forth on my side to soothe myself, I have done it since I was very young. I have to put my fan on to sleep, the noise and the feeling on my face is necessary to fall asleep, and it helps keep my temperature okay.

Then, the cycle of morning starts all over again!

[tontoemojis]

Do you have a discord server? Or would it be okay if we made one for your emojis? (/nfta!)

I do not have a server , but I would not mind someone making one !!! although if the server actually is made I would like to be invited to it !!

my DMs are open to talk about it if ya want .

[autisticdreamdrop]

View this post on Instagram

A post shared by The Dreamdrop System (@dreamdropsystem)

new insta post

[drdemonprince]

Hi there, I have a question I’m hoping you can help me work through a little. I’ve started reading a book on love as an autistic person which I was really really enjoying and resonating with until finding out that one of the autistic people the author interviews uses partner assisted typing with his mother as the facilitator (she used to hold his wrist/arm I believe but generally just puts her hand on his shoulder now?) and I went down a bit of a rabbit hole on facilitated communication and now I’m just…very lost on where I stand? Like reading that it is widely debunked as pseudoscience and the gut feeling I have to be afraid of communication that has the potential to exploit a nonverbal autistic person with high support needs are both pretty compelling for me to be very sceptical, but then I think about how historically science is not always kind to marginalized people and researchers are still susceptible to social forces of discrimination etc, and I see people on tumblr posting about using it/supporting it and I just….i don’t know what to think? Should I move on from this book since the author has framed what seems to essentially be FC as evidence of ‘his mother’s love’ or just proceed with caution??

Idk I don’t want to put anyone on blast here I just have a very very acute sense of not wanting people to be exploited and a fear of inadvertently supporting something that hurts other people?

Yep, Facilitated Communication is bunk. It's the Ouija Board effect basically. Other communication methods for nonverbal Autistics like AAC or PECs are legit, as is simply typing on a device for those that can do it -- others use other methods like copying and pasting words from a large vocabulary file if they can't type. But FC relies on the presence and interference of a parent or caregiver and is not to be trusted. This is why the book The Reason I Jump should be viewed with suspicion. It was supposedly written by a teen (and his mother) using FC. If the communication method cannot be used to produce the same results without the interference/involvement of a parent, something very fishy is going on. And it's awful that the words of caregivers are being passed off as the communication of the Autistic person themselves.

[spooksforsammy]

Welcome to my page!! My names is Amy

Important things to know:

🫧 I am African and Native American and minor

🎧I was diagnosed with a speech delay at a young age and started speaking extremely late. I had a lisp and multiple problems pronouncing certain words and sounds. My language abilities change frequently but I still struggle deeply with expressing and understanding.

🕸️I have difficulties with social interactions. This includes engaging, initiating, and understanding the people I’m talking to. My interests are limited which means I don’t talk to or follow many people.

What you see here isn’t my full life. Don’t tell me how much I do and don’t struggle, I am a person on the internet you don’t know me

I respond to asks but please be patient! Promise will answer! If truly scared didn’t receive ask, feel free send another asking about it, won’t get mad and will probably help remember need to respond’

Other information!!

🧩I have ASD or autism spectrum disorder

🗣️I am semi verbal and have a moderate- severe speech impairment. I’m also a part time AAC user. My communication is off n ability n skills changes frequently.

🧠I have severe depression, anxiety, and PCOS. I suspect BPD, NPD and bipolar disorder but am not self diagnosing those

😆I don’t understand tone but tone tags also don’t help! I’m sorry if my tone is off, let me know your tone and give me some time.

💉I get sick frequently n document what symptoms/ problems that get. My account has a tw for sickness because of that. Be aware if things like that trigger you. All post like that are tagged accordingly.

Gender and identity

🏳️‍🌈I have multiple gender and sexuality identities. I’m grayromantic, pansexual, quoiromantic. I’m apagender and nonhuman. Don’t have other species though, just don’t feel human.

Pronouns it/ its or just use Amy!

I have an understanding on gender and different identities but low understanding on why; this makes struggle with other genders and pronouns. Tell me if get wrong but please understand even if try, might not get right. If just can’t use your pronouns will say so and ask for other options. Please understand this because of autism

Don’t have DNI!! I block freely. I don’t like fakeclaimers, I hate them with a passion. I don’t care the reason, what they did. Only way tell if faking is if they admit or professional evulate and say they don’t. You can’t decide that!

💬Anyone can interact! Just know am minor. If you uncomfortable with that or make me uncomfortable you will be blocked!

Tagging system

* all post here on out will be tagged based on the following

🌀#speech4amy: all post made by me

🌀#babyamy: anything related to age regression or age dreaming

🌀#amytalksaac: post written with aac or talk about my use with aac

🌀#personalamy: post about personal situations. These post might also have a tw on them

🌀#amy’spoetry: any poetry or related made by me

Updated as of April 27 2024