Kiku wants post more about Kiku's experinces, with becoming nonspeaking/nonverbal and becoming an AAC user.
Kiku is not a lifelong nonspeaker, Kiku could talk a lot when younger actually. (note when Kiku says younger Kiku means tween and older mostly because Kiku not remember much before that and Kiku goes off what told about how was).
Kiku has always been the quiet kid, and Kiku struggled a lot with words not coming out how Kiku meant them (whether that was wrong order or word sustitution because of what Kiku thinks is aphasia due to migraine, or what Kiku said not meaning what Kiku meant it to mean and entirely different words coming out (unreliable speech), and also just with figuring out what Kiku want to say (Kiku is learning that Kiku has trouble understanding what words mean sometime, not sure why tho). Self generated language is hard, with Kiku using echolalia/gestalts a lot with writing and Kiku's AAC. Kiku likes to discribe Kiku's language like a puzzle Kiku has build from other's words. And Kiku isn't very good at english, even though it's Kiku's native (and pretty much only) language. Kiku has a hard time learning languages and is slow at it.
Kiku thinks Kiku was more semiverbal/semispeaking when younger (although that was at least partially out of a trauma response from being forced to talk) and feeling like had to talk any time was around people so to compensate Kiku spent much of middle and high school in Kiku's room completely silent. As Kiku got older and older Kiku has had access to mouth words less and less and when had them it was exausting to talk, and errors were likely.
Now most of Kiku's attempts at speech (that aren't just repeating something Kiku heard or sometime Kiku's gestalts, because for some reason Kiku can do that sometime) sound like gibberish, and often aren't understood even by Kiku's partners. (There's like a 30-50% chance one of Kiku's partnes will understand Kiku's mouth gibberish.)
Kiku can voluntarily make sounds, but words just not work most the time. Kiku suspects Kiku has global apraxia or at least apraxia of speech and motor apraxia (Kiku doesn't remember all the words right now). And Kiku knows Kiku experiences situational mutism, even now with Kiku's AAC, Kiku just gets so anxious that Kiku can't communicate using out loud words. It's one of the barriers Kiku has to using AAC to communicate effectively.
Kiku has for as long as Kiku can remember had trouble with words (except reading, at least on the surface. Kiku is hyperlexic and read a lot but Kiku's reading comprehension isn't actually the best, Kiku can read real fast but not always absorb the information, which common with hyperlexia. And Kiku is dyslexic, which has caused pronounciation problems when Kiku has come across words Kiku not know the sounds for. )
Kiku thinks Kiku's becoming nonverbal would be considered a regression. Or caused by burn out (Kiku not sure if those words used interchangeably or if mean different things.
Getting AAC helped immensely with Kiku's ability to communicate, but it not a magic fix all, Kiku has barriers to Kiku's aac use. Including anxiety, trauma from being forced to speak, it not occuring to Kiku that Kiku should/can communicate, motor difficulties, Kiku's migraines and visual issues from them, processing issues, and problems with wording what trying to communicate probably among other things Kiku can't think of right now.
This has kind of turned into a ramble but Kiku wants to talk about this. Also if anyone has questions about Kiku's experiences with becoming nonspeaking/nonverbal and an AAC user feel free. Kiku loves answering asks.
Thank you @nonspeakingkiku for sharing about your experiences with speech and AAC!
