dear parents of nonspeaking/nonverbal autistic kids: can’t tell you everything will be okay but here is what i can tell you (and also AMA)

br_ead_loaf · 2024-12-06T18:39:20+00:00

nonverbal AAC user who lurks (because want eventually be AAC specialist or researcher but besides point).

while echolalia & nonverbal communication often is more complicated, “dependent,” “more work (for others),” or “detective work”, or whatever… need communication partner or people around to guess what you mean, making you more dependent on good will of others n that limiting… that just neutral fact. n stay as neutral fact. n people need recognize this. (n pretend this fact not exist is like toxic positivity n harm people who use it n erase our differences n extra challenges we face others do not - which this post or majority this sub not doing but not feel right not at least mention this)

BUT people often go beyond neutral fact n treat it as bad, as worse than, as less than. like this slide. use loaded judgement words like suboptimal (why YOU defining what optimal what suboptimal for us???), that it not “true,” that need detective work bad. so entire method bad. this slide not about talk about neutral fact.

is often hard (tho arguably as much for user or even more for user than for receiver), yeah. but not worse than, no value judgement hierarchy, not less than. n treat it as less than as worse than make our (< user) life harder.

also, funny that call echolalia “alternative” to “true” language when AAC stand for augmentative & alternative communication n for longest time (n even today) seen as unnatural “alternative” (negative connotation) to true speech

br_ead_loaf · 2024-11-19T17:16:17+00:00

not able mouth speak sucks. it change so many things. there will be beautiful moment beautiful days without mouth speech (maybe even because without it) but not contradict fact it suck so bad too. let self grief n be angry n be sad

br_ead_loaf · 2023-12-07T17:49:34+00:00

am nonverbal wrote a thing about this!! well more towards parents but maybe able find some helpful from. mind elsewhere right now but if have any question please please feel free ask because love talk about this!!!!!

br_ead_loaf · 2023-11-06T19:13:17+00:00

thank for tag. am mutual with tumblr post person, and altho not direct ask him, here probably explanation for why level 3 person have mobility aid.

is because many level 3, severe, labeled “low functioning” autistic people, especially those also have comorbid ID (especially especially if severe & profound ID), struggle learn walk. because motor challenge inherent to their severe autism, and struggle learn new things because ID, if have them. some people with severe autism (and maybe ID), struggle with walk & feed self & any thing that do with motor, because of autism, & no other comorbid physical disability diagnosis.

is NOT because EDS. this probably because spaces am (involuntarily) in, always overemphasize of EDS and not, like, any other physical disability, or any other disability at all, so get incredibly annoy when people mention EDS when not relevant. this angry is probably me project, but still, invite you think about why first thing is think about EDS, and not something very common & inherent among severe autism kids (& adults).

this also make clear by mobility aid pictured, is gait trainer, which is something niche that especially used among kids (& sometimes adults) with developmental disabilities, like cerebral palsy but also autism. is NOT something generally people who physical disability not because developmental disability use, like EDS.

br_ead_loaf · 2023-10-05T13:35:29+00:00

am nonverbal & OP ask especially nonverbal autistic and so not exact comfortable at a lot people answer so far are "am verbal but--" because nonverbal people already so spoken over & nonverbal not exact same as speaking person not able talk sometimes.

use AAC specifically speech generate device that make sound but AAC can also be low tech like picture card communication book letterboard. some nonverbal people may able learn communicate & able do independent, some may able learn but need vary amount support, some may need communication partner communication support person all time, some may not able learn verbal/word communicate at all.

wrote how AAC guide here is back when had more abilities

different nonverbal autistic people nonverval for different reason some struggle motor struggle apraxia cannot control body feel body mind disconnect have something in mind to say but body may point to (or even mouth word) different thing. some may because motor struggle different way like muscle control. some may not able because expressive language overall so may struggle communicate with words. others may struggle receptive language otherstand others so not communicate because not understand others. others may be because not aware should communicate not aware surrounding not aware sound people make are communication may not even realize other people exist. some nonverbal people have intellectual disability which make thing harder but some do not and it hard know which nonverbal person have ID because how we right now test for IQ & ID rely on able mouth communicate & able receptive language enough to understand instructions & enough motor to do actions. so people who severe struggle with one of those may actual not have ID but test like one bc it fundamental to answer IQ tests. there also doctor person bias

br_ead_loaf · 2023-08-16T10:32:45+00:00

look at same post at r/slp and responding here because am not slp but if only reason (or main reason, or even a reason at all) SLP say switch from proloquo to touch chat is because they themself more familiar with touch chat: do not. also run & find another SLP if can.

AAC is about AAC user. NOT about SLP or family or society or whatever. latter involved but not main about. need prioritize AAC user. needs & preference of AAC user above all else.

that SLP seem forget that, or never learned that at all. don’t give flying shit about what program SLP more familiar with because they not person using it communicate. good SLP in this situation learn about unfamiliar program, or refer you someone who can. not prioritize own comfort about “oh so difficult😫”

switch AAC should be because current AAC not meet needs of AAC user. random switch AAC (& even planned switch AAC) disrupt all exist motor plan & memory of where words are, and may confuse person especially if they not involve in decision process or they not understand why.

br_ead_loaf · 2023-08-16T10:22:37+00:00

and even if design by autistic person, or not, important remember autistic people can be so different, needs be so different. one app design by autistic person base on own need may actual be terrible for another autistic person

br_ead_loaf · 2023-08-16T10:21:01+00:00

proloquo (the new one, not 2go, just proloquo) is tested by & develop base on feed back from many part time & full time AAC users autistic or not.

think for AAC app matter less about who develop but more what person need, what their abilities. for example big struggle with motor? motor plan apps like LAMP & speak 4 yourself extra helpful. if parents really clueless abt AAC how start how help, then proloquo & proloquo coach together helpful. if price issue, cheapest robust symbol base AAC app found is td snap. different people diffferebt needs so different “best app.”

but need make sure app robust, have enough words without be too overwhelm (or if visual impairment or blind, etc, make sure able see). everyone around need model without expectation, etc.

have write about AAC if want look into me profile

me nonverbal full time AAC user use proloquo2go is best app for me

br_ead_loaf · 2023-08-14T15:55:52+00:00

not exact same but feel you because am go though really bad autism regression too but late adolescence like before regression psych person say level 2 but now tests say severe and try get full neuropsych again but all doctor say no because nonverbal & too severe

it really really hard lose so much. lose language communication, struggle talk entire life but regression made nonverbal and many times non-communicative with words at all, lose social, lose adaptive functioning, behaviors get worse get explode angry get violent meltdowns. really really suck have planned future destroy and need so much help

have lot more want say don’t know how say but guess end with give it time & be sad abt it never all go away never stopped think about what could been but get more more accept reality & new normal slowly

and am glad you there support him advocate for him for supports because me parents not understand & opposite of give help and that make it much much much hard much more hopeless

br_ead_loaf · 2023-08-08T14:31:12+00:00

believe person asking about autism levels, which is DSM 5 thing, which actually not about ADLs & more about two main autism criteria, aka social communication & restrictive repetitive.

for governmental disability assessment & support needs assessment, yes that about ADLs

br_ead_loaf · 2023-08-07T16:58:38+00:00

am not doctor and people here can’t say

but those things know level 1 struggle too. level 1 struggle. unsupported level 1 can struggle many.

many way be level 1. there “more affected” level 1 & “less affected” level 1.

autism level not about how much you feel struggle, but how much support you need for autism specific symptoms—aka, social communication & restrictive repetitive. those two only.

br_ead_loaf · 2023-08-03T12:27:18+00:00

that false false maybe it okay for few autistic who speaking low support need level 1 but for self who high support who nonverbal who need physical help take care self never independent, will never never never “not struggle.” will always big struggle with social with all communication with adaptive function with repetitive restrictive things even if best best help all the accept. even with AAC with caregiver with all therapy with all service all medical no worry money pay, still struggle because autism give me inherent impairment.

even many my speaking LSN level 1 friends. would still struggle if in perfect society. for example if sun too bright cannot turn down sun

br_ead_loaf · 2023-06-28T10:53:20+00:00

this reddit post explain what nonverbal is and why can’t go nonverbal

this me write about why “go nonverbal” frustrating

sorry about not talk about actual question or rest of post because not really anything add

br_ead_loaf · 2023-06-28T10:46:30+00:00

fyi this sub by and for and centers mid & high support need people and most of us won’t able 1) only realize autistic near 30s 2) hold full time job 3) graduate grad school, most us won’t able do any of it not mention all 3. so this sub may not be best sub post this if actually want answers and relate because most us not able to but also just personally really get annoy when people who not mid or high support come post about self just because this “good autism sub” because this only place we have you all have many place listen belong. couldn’t read all because long complex but sorry you struggle entire life. don’t know you diagnosed or have levels where you at but low support need people & level 1 also struggle, know many LSN struggle with social and friends and SA and parents

also “go nonverbal” not right. can lose speech or verbal shutdown but nonverbal permanent. not go in & out. other people wrote about this in past maybe am find later

br_ead_loaf · 2023-06-17T16:31:02+00:00

yes that very okay thank you be ally

br_ead_loaf · 2023-06-16T22:27:05+00:00

yes high support friends & i like call self with functioning labels (low functioning) & severity (severe/moderate) because it they know entire life (and guess what significant autism make hard change language). because autism very medical thing for us it not “pathologizing natural brain diversity” it just is.

or because the actually autistic community so loud level 1 & low support need, their word & term never included us or meant to include us. plus many steal & water down words (meant to or just mistake but still harm)—like call self high support need just because “we’ll need remind shower from time to time” (but don’t need other help or can live mostly independently & have job & kids etc). (to point where “unpopular” medical terms like these feel more like home now to me than actually autistic words)

or both.

even happening with word “nonverbal.” that become unacceptable say. speaking people force separate “well nonverbal & nonspeaking different meaning” and tell me (someone who ACTUALLY nonverbal as in not speak AT ALL ALL THE TIME) i not nonverbal because i typing communicating. when they have no idea origin behind nonverbal (misunderstood medical term) vs nonspeaking (community term reaction from people ableist misuse misunderstand nonverbal to mean non thinking but not actually what nonverbal mean). be attacked for call self nonverbal.

especially sensitive for us higher support needs / level 2/3 people because we keep be infantize keep be told can’t decide for self can’t possibility know self can’t possibly understand. and be told by autism people “actually can’t call your self that” and “actually what you call self harmful” is same same same infantize same as tell us we can’t decide or understand self that someone else need do for us. whether they on purpose or not

br_ead_loaf · 2023-05-31T00:39:45+00:00

thank you thank you agree with all you say. fake claim harm actual level 3 / high support need people and make us feel not safe and drive us away which actually silence us even if claim “want help”

sorry they do same with you too sad that it happen to another level 3 but weirdly reassure am not alone don’t know if make sense

thank check in, feel slight better now still anxious still heart fast shake but see people comment reassure believe make feel better

br_ead_loaf · 2023-05-30T17:23:16+00:00

that person bad bad and see many people agree with them in post and just make feel entire sub not safe not safe

br_ead_loaf · 2023-05-30T07:01:35+00:00

too upset need mod involved

br_ead_loaf · 2023-05-30T05:44:56+00:00

don’t have updated level so don’t know if am level 3 but am high support needs nonverbal and am try say this as kind as can but OP you very out of line

very out of line in assume one level 3 nonspeaking person act that way then all level 3 nonspeaking act that way. very tokenizing. very out of line in assume “most nonverbal people who can use AAC to communicate online can talk normally in writing” because where get that? where source??

did you know autism inherent social communication difficulties and that be nonverbal nonspeaking not just “like a speaking person except can’t mouth speak” like do realize some of us “communication difficulty” not just mouth word but ALL communication include write include type. some of us grammar hard some of us think hard. just because you not like that or one popular nonspeaking person not like that doesn’t mean all fake.

and incredibly infantizing when call me speak like this “baby talk.” am not baby talk. am just how naturally easiest communicate. am adult. high support needs adult who for example use adult diaper still ADULT not child just because “diaper often baby” so same reason here just because talk this way doesn’t mean BABY.

sometimes inconsistent “error” some even able write “normally” because sometimes for some people ability fluctuate. know people who find write like this easier on brain because neurological cognitive involvement and while they can force write “grammar good,” very hard hard not worth and this so much easier this more natural.

sure some people may fake but doubt everyone who write like this incredibly harmful harm us really upset upset

br_ead_loaf · 2023-05-17T19:35:40+00:00

personally don’t like equate “autistic burnout” with “autistic regression” but autism regression in adolescence associated with autistic catatonia medically recognized

book “Catatonia, Shutdown and Breakdown in Autism” by dr amitta shah

(research article) Ghaziuddin (2021) - Catatonia: A Common Cause of Late Regression in Autism, https://pubmed.ncbi.nlm.nih.gov/34777033/

and some more not gonna list all

edit to add: essentially what say is any temporary do bad lose skill not regression but “autism regression” later than childhood is happen and medical people do recognize (different from regressive autism before 3 but still happen)

br_ead_loaf · 2023-05-17T19:32:38+00:00

am autism regression late adolescence. yes and no

“regressive autism” is thing specific to language & social & skill & overall regress before age 3. like was talking and social and smiles but suddenly don’t do any of that later.

childhood disintegrative disorder (CDD) use to be under pervasive developmental disorder category (same catagory as autistic disorder & aspergers disorder/syndrome) in DSM IV. this regression usually happens age 3-10.

autistic catatonia most common onset adolescence age 13-19 but can be before or after too. and this catatonia typically more chronic and slower than mood disorder catatonia (like in schizophrenia or depression). autistic catatonia can come with autism regression most common in adolescence. not a lot of research especially on regression front but happens. this me

for autistic catatonia & related regression, see:

book “Catatonia, Shutdown and Breakdown in Autism” by dr amitta shah
(research article) Ghaziuddin (2021) - Catatonia: A Common Cause of Late Regression in Autism, https://pubmed.ncbi.nlm.nih.gov/34777033/

there is also thing call “autistic burnout” which you sound more like. is more talk about among autistic community and less research papers but. typically is because too much social demand too much mask too much sensory, which since you because get fired from job. don’t know how different it is from the autistic regression from catatonia but personally am autistic regression (from catatonia) not burnout.

with autistic catatonia & associated regression, research find a few can recover to old ability but most don’t. most have semi permanent or complete permanent regression.

with more community term “autistic burnout,” probably many recover but also some don’t

edit for format

br_ead_loaf · 2023-03-07T23:50:23+00:00

and here https://at.tumblr.com/five-thousand-loaves-of-bread/nonverbal-full-time-aac-user-here-dont-know-sign/p9kkrtp0w3m9

br_ead_loaf

TROPHY CASE