Non-verbal autistics...

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Yea see even my autism specialist and other ppl think a dynavox would help, but my mother thinks ill become relied on it and never use my speech at all. I kinda agree with her and kinda wish i had it at the same time. What i want more then anything is just have it easier speaking, there are times that i can talk, even well, so my mother thinks its not worth all the investment into getting one if i do have speech. The thing with me is just i lose my speech, depends on a lot, if i use my speech for lets say 4 hours straight without a problem, the rest of the day my verbal speech goes, i become babbling, or doing echolalia, or one worders or when i get real bad im completely nonverbal, it sucks. So i learned to not talk much, just here and there, and still end up babbling, one worders, or just noises a lot of the day. I'm thankful i found pecs, they help a ton and signing is such a great resource for me. Its like my vocal cords cant handle being used long and my brain loses the connection between the two eventually and im completely lost. Thanks though for trying, if worst comes to worst thats my last resort hehe.

I got my first keyboard approved when I was still partially able to speak. A speech therapist showed that my immediate ability to describe things (i.e. in situations where I could not "fake it" by echoing nor have lots of time to respond) was a little behind my age in typing and far behind my age in speech. I by that point had significant parts of every day unable to talk.

One of the weird things about insurance though is sometimes they'll only approve something if it's for talking to doctors. So my history of not being able to vocalize stuff about my body (including some pretty serious things that landed me in the emergency room or the hospital after people noticed), but having more luck in writing, counted for a lot there. It's as if they believe life is one long medical appointment.

With wheelchairs, I had, despite the ability to walk some of the time for short distances, real trouble fending off a powerchair my first time.

I don't know what on earth made the difference there. But I did talk them into a manual one. (At this point given the things my physical therapist is saying to me I doubt I will be able to get away with only a manual next time.)

I have friends who either aren't insured, or don't have diagnoses, etc., and many of them can rig up computers to do the job. One of them even invented his own speech software which is freely available on the web, and uses it on his tablet computer.

Also, look up shinymetalbrain on Youtube, she has a portable computer she uses for speech output and shows it on her video, and I don't think she got it through insurance.

When my first device broke, I found very cheap ones on eBay, the problem being they were cheap because broken or partially broken for the most part. Had to have a friend with tech knowledge put several broken Liberators together in order to form one working one, which also wore out. So have a ton of broken devices in my closet.

There are cheapish devices that hold a preset number of communication buttons, with pre-recorded messages.

I am writing this right now on my communication device which doubles as a computer, but I got this one through insurance.

Oh, and, yeah, not a choice. Unless it is meant the choice between uttering words I don't mean, and not uttering them -- I do try to suppress those sounds when people are around, because it confuses them, especially if they trust speech over typing for any reason. (I used to think this meant "choice" but realized that most people if only, say, able to say "potato" over and over -- the last conversation I tried to have orally involved me doing that because someone else had said it -- wouldn't then consider typing a choice.)

So I can say words, mechanically, some of the time, some of the time can't even do that (when that used to happen to me while attempting to speak... my speech would rapidly become incomprehensible if I was still able to make sounds at least, and nonexistent if I couldn't even do that). Can't make the words say what I mean. Can sing a lot of the time, because it is entirely memorization of words/sounds/tones/etc. Can echo (immediate or delayed) sometimes. Can tic verbally. Can catch myself repeating random words. Cannot speak to communicate anymore. (Used to be able to at least somewhat (never 100%, ever, nor even close), went into gradual decline throughout adolescence. Prior to that, had also lost speech in early childhood and had to regain it. It just doesn't seem to stick with me.)

I still have some communication problems in typing, including sometimes not being able to type, but at least I can make myself understood much of the time.

Oh also there are often problems with the very thing of words, and when those are their most severe I obviously couldn't talk or type when that comes up. Just typing is easier, not entirely sure why.

I also can't usually type if something is saying the words right as I type them. (Which makes me wonder if that's part of my speech problem too -- an overload/multitasking problem.)

well at least u never lose your ablity to write on computer

I am very nonverable.

My sisters did all my talking when I was little.

I can force myself to talk when I have to. I find when I am really overwelled I have a hard time talking.

This is how I picture it:


Granted, it would be kind of cool to not have to talk when I don't want to. I'd type stuff out on a computer and have a Steven Hawking voice say it for me. That way people would leave me alone when I want them to. But I can't imagine going out to parties trying to use sign language or voice synthesizer lol.

While I'm mostly verbal, I remember that when they were doing the verbal portion of an IQ test and they wanted me to answer the questions, I wasn't able to speak much at the time, mostly just use gestures (though I don't remember sign language, but I learned a lot when I was young, and anecdotally that really developed my communicative speech, though it wasn't part of a formal therapy or anything) and say random words, so they had me type, and after typing a number of responses, I started to speak some of them. The typing helped me to speak, essentially.

I've heard similar things about use of sign language, pecs, and typing helping to develop more communication as well as speech in autistic people. And besides, for times when not verbal, you rely on the sign language and pecs to communicate - so I don't see how being able to type would be any different from that, though it would have a wider range of things to express and/or more people who would readily understand without interpretation.

See thats interesting u can sing songs, only certain few songs i can sing and memorized the whole song, sing somewhat good then be nonverbal the rest of the day. i also do what u do, i repeat a lot whats said. i find it weird, i know i have a certian vocab of words, like i cant always say i want things, so i might repeat a word that even doesnt make any sense or reveleant to what i want such as "babies" ill say "babies" over and over and over agaim, and everybody has to figure out what im refering "babies" to, like is it food? is it im tired? is it my phone? is it my pot? is it my clothes? could be anything. I also can't always say the person right name, like i might refer everybody as david, dont ask me why, or lady even if its a guy lool. My mind cant always say what i want to say so its like it has 5 or 6 words to pick from, bubbles, david, babies, rovert, daddy, haha i know weird random words, but those are what i call my vocab half the time lool. I also have verbal tics where i say daddy over and over again haha.

Anyways its hard because i really want to say like for instance i needed my cell phone guy to rub and stim off of, couldnt find it, usually do the sign, but if not will say like last night "babies" and he would just look at me like ummm, then I would get louder "BABIES" and he would automatically assume something i desperately needed, which is usually my cell phone guy or my pot lol. When i also get upset idk why i cant say im upset, and i dont know why im upset, so when that happens i usually just yell "NOOOOOO" over and over and over again, then everybody goes through the process of want a hug? you hungry? your nose bothering you? you bored? and if they ask a question right i stop saying "NOOOO" and usually flap, and its like oh ok. Its all about the guessing game with me. I'll get upset over nothing, literally over nothing sometimes i just become angry, and sometimes i can say im getting angry, or ill just start breaking things, or becoming very aggressive, then its like why are u angry? i never ever respond, so then they go through "are u hungry? are u bored? was it me? did something happen? is everything ok online? until they get a handflap or a grunt or a nod or sometimes a yes. Afterwards if they try to build more into it, it just gets me angrier and usually storm off, then they have to do the process of walking in and do the question/guessing game again... like last night i got mad because my movie was coming on 30mins and my brother started watching a movie out there, so i stormed into my room, joyce meaning my mother did the question game in the begining no replies except leave me alone and i stormed in my room, so therefore if nobody comes in to keep the question/guessing game going i get angrier, so my boyfriend walks in and goes whats wrong? u hungry? r u bored? wanna watch a movie? finally i do this smirk, then he knows oh ok, then thinks of oh crap i had a disney movie to watch, and says "ur mad because ur brother is watching a movie when ur movie is about to start?" and i just shoved my face into my pillow and did alittle headbang which is usually a yes lool, and then he talks to my brother, and gets him out of the living room before world war 2 happens, then coaxs me out of my room, then i run handflapping on my tippy toes. Its really weird yes, but language sucks with me. When i was younger i was ten times worse, now i can at least tell u sometimes im going to meltdown or im getting upset or angry, not always but can, which does help everybody. Usually i cant explain why afterwards but at least they know lool.

I also talk in my own language alll the time, which is basically babbling with spanish and sim language mixed in. I wish i knew how to fix all of this. When i become completely nonverbal i cant always use my sign that good, its like my fine motor skills i use for my sign disappears as well, so if my pecs arent near me, its allllll about the guessing game and usually i like do mini meltdowns to communicate.

So i guess my main communication thats used when your around me is the guessing/question game hahaha wow the weird part is i didnt even realize that, that was my main communication source haha, see, learn something new everyday lool .

sounds hard to be non-verbal

Age, I would really recommend you get some kind of communication device. I'm sort of almost a speech therapist (I'm graduating grad school at the end of this month). If you were my client, I would definitely want you to get an AAC (augmentative and alternative communication) evaluation. Even if you are concerned you will become reliant on a device to the detriment of your speech, it sounds like speech is not functional for you a lot of the time anyway. Although speech is definitely useful (it is hands free, has no battery to be recharged, etc.), speech is not some ultimate goal to be achieved. *Communication* is the goal. If a device allows you to communicate more effectively, then I hope you follow your therapist's recommendation and get a device.

It seems like a device may be especially useful when you are upset- need to stim, sick or ill, or in frightening situations- here I am thinking about that incident you had with the police. A device could have a preprogrammed message for the cops, which could explain the problem to the cops or make requests for slower speech, etc. Cops may also take your communication problem more seriously if you have a device.

People with severe aphasia can also often sing familiar songs, yet be unable to speak. Repeating speech with a sing-song intonation can also help. This is actually the basis of melodic intonation therapy.

I haven't used it for nonverbal purposes yet (haven't had it handy in this rare occurance) but I was thinking Pictochat on Nintendo DS would be very useful

Even just writing it on there and showing it to the other person. My GF does that a lot when she wants to tell me something but doesn't want anyone to hear.

Hmm...might even be a homebrew speech application for it...

Yea i know, i always think though would i work so hard to talk or would i just give in and use the device? would i just be reliant on the device and give up talking altogether? I'm also afraid ppl like my brother and relatives think ill be using it as an excuse especially since i can be verbal and am not 100% nonverbal. So many things go through my mind, i go see my autism specialist this wednsday ill talk with him about it. I worry though because i push myself to talk, to do so much, despite the autism, and i dont want the autism winning if u know what i mean, i dont want to give in to it. I hate my language speech skills, but sometimes i feel good that i can at least talk, i feel so horrible for people who are completely nonverbal. I work with a little girl whos completely nonverbal, taught her some sign, and she only uses one hand, and i see how frustrated she gets, and i just wish i can find a cure, communication is such an important thing in life! Thanks for the idea, and i know it will help with the cops big time, thanks to the stickers, i dont have as many problems with cops. Anyways thanks though for ur advice!

yeah, I have a card, that i can show to anyone, and it says attention police/emergency services- i have an autism spectrum condition

i have that kind of card too since im driving

haha, we're priviledged

Wow, I've done / do all these things. Usually by evening, I repeat the word "Rosie" in response to questions and things. (Rosie is my dog's name.) My mom seems to think that I'm just not wanting to talk to her sometimes, rather than that I don't have the energy to do so, since my energy for speech purpsoes tends to cycle back and forth, so that when I wake up I have little communicative speech, then a few hours later I have lots, then very little, and so forth. Almost like I can get another wind, except that if it's too stressful, I don't get a jump in energy for speech and stuff, and that's when i have more prolonged absence of communicative speech.

One other thing I do, is that I'll repeat from a TV show or something, at a time when the quote is peripherally related to the situation. My mom is usually totally clueless, but my dad understands maybe 50% of the time right away, and other times can usually figure out with the guessing game. Unfortunately lately my alphasmart recently I turned it on and all my files were gone (in addition to communication purposes, I'd used it to take notes for my novel), so I am refraining from using it until we have someone try to recover the files. I got it from the Internet (ebay I think) for about $100, when normally it's $300-$400, so it's not totally unexpected, but still sucky.