#aug comm

[anautistic]

The AAC Awareness Month 2025 sale graphic by Lauren Enders Gonzales is here! To download it and get clickable links, check out the link to her google drive file on her FaceBook, or click here: https://bit.ly/AACAwarenessDeals2025.

[unusualaugcomm]

I don't know how often I'll post from this blog, but I wanted to start it in case I wanted to make various posts.

Basically, I'm Mel, I'm a long-time aug comm user who knows a huge number of people who either do use aug comm or wish they had the resources to use aug comm. And yet only some of us are able to use it at all, and very few of us are able to use it to its full potential. Mostly because the people who make, distribute, and train in aug comm, only take into account a narrow range of experiences of aug comm users. And even within that narrow range, they get a lot wrong, because most aug comm is made for the benefit of speech pathologists and parents far more than it's made for the benefit of aug comm users. A lot of is aimed at children or people who are presumed to be "like children". Very little of it is aimed at adults, very little of it takes the complexity of our needs into mind, and very little of it deals with high-level communication problems of various sorts. Hell, I was just reminded of all this by a professional in the field just before creating this blog. But most professionals won't even admit a fraction of it. There's also a lot of myths and taboos in the aug comm world, things users are not supposed to bring up at all, things nobody is supposed to bring up, things we're supposed to pretend out of existence. So ideally this blog would be for discussing all that. Maybe at some point it'll be a group blog, I don't know, but for now I'm the only person on it. I will hopefully not just be representing my own perspective, but also the perspectives of other people I've run across over time. That said, I'm going to be biased, and that's not a bad thing, especially given the directions the biases in the field run at the moment. We need a lot more people with the biases of actual aug comm users speaking up. Anyway, this blog is for literally anything related to aug comm, from very personal stuff to very general stuff and eveyrthing in between -- keeping in mind that even things that sound very much like a single personal experience, never are. They're always in a general context. And if one person is experiencing something, so are... hundreds, thousands, millions? I'm not good with large numbers of people and statistics, but you get the idea. Nobody's unique experience is that unique even if everyone says it is. And we're often told we're unique as a way of making sure nobody has to tackle our experiences when planning for stuff. Plus people really have often never heard stuff before, so they can mistake things for unique that aren't at all. Anyway, there may be tons of posts on this blog, or there may be none, and that's the way my blogs go. I have pretty bad inertia so I don't have a lot of conscious control over my post output. I can't even give you a lot of information in this post about what aug comm I use and/or need, and why I use and/or need it, let alone more in-depth information. So you'll have to do with this post. I can say that my main AAC is Proloquo2Go at the moment, I use both the typing and the grids. That I've had plenty of other kinds of aug comm devices in the past, some purchased on my own and others through insurance, some high tech and some low tech. I also use home sign (a term originated in the Deaf community for the signs that children invent at home outside of recognized sign languages, but also used by other people with speech difficulties at this point) and assorted noises. I used to have speech but even at its most fluent-sounding, which was very, it was never 100% communicative or even approaching that, so my speech history is extremely complicated and could probably fill an entire book in itself. I have a complicated combination of cognitive and physical disabilities that render communication difficult in any form, some in ways that are more or less constant and others in ways that are more or less always shifting and changing. Also, my tendency to write things in a very long-winded fashion and have trouble summarizing them in short form is, itself, part of my communication problems and one that I work hard to overcome but that I can't always. So please don't blame me when I'm longwinded and can't provide summaries -- it's not a choice. One thing I really hope to document is the number of communication problems that nobody ever seems to want to talk about or even recognize exist at all. But that's one thing among many. I've just known so many people with such a wide array of problems that every single description of communication problems I've ever seen in aug comm literature seems grossly oversimplified at the very best. And generally they're only taking a fraction of that stuff into account even so. I also want to get into common myths about AAC both among the general public and among actual AAC professionals and users alike. And controversies, sometimes. And other things. Anything related to AAC is fair game pretty much for material for this blog. All from my particular biased perspective and sometimes the particular biased perspectives of other people I know whether they resemble mine or not. But mostly mine and those similar because that's what I know best and I know most people aren't hearing these things so our voices need to be counted in. (Strange how AAC is supposed to be all about our voices but our voices are rearely heard in AAC contexts except when they are in service to what everyone already believes anyway.)

[withasmoothroundstone]

iPad mini

I am seriously concluding that for an ambulatory person using it as a communication aid, an iPad mini with a decent but not overly bulky case, is way superior to an iPad. It does all the same things but it's not as unwieldy.

[withasmoothroundstone]

My New iPad

So I had gone to Small Dog Electronics for the purpose of repairing my computer, which had stopped recognizing any and all power supplies.  (I know what it looks like when a power supply is the culprit and this is not it.   Apple agreees with me, and it's under warranty so I don't have to pay anything. Then I showed them the shattered glass on my iPad (I had very stupidly taken off and left off the cover for awhile and then dropped it because I'm a klutz.  They told me that nobody really repairs glass on iPads anymore, except some people who do it sort of not illlegally but certainly without Apple's approval.  (Apple creeps me out sometimes.  I need their products because they are the most cognitively accessible ones out there for my brain, but the way they try to control everything seriously bothers me.) They told me I'd be better off buying an iPad Mini than paying to have my screen repaired.  I told them it was moot because I don't have that kind of money, ever. Then the next day, I got a check in the mail from the Burlington Housing Authority.  It seems that not only did I get my full security deposit back despite the wreck I made of the place.  They must have very low standards.  It also seems I had been overpaying my rent for months on end.  The upshot was i had just enough money to buy an iPad Mini 3, wifi, 64 GB (!!!!!).  The case was free because it was the house brand and they were having a sale.  And a screen protector, and an extra power cable sturdier than the one it came with.  The salesman was great. He answered all questions honestly and didn't try to sell me anything more than I needed. In fact I was the one who made my order bigger than expected with the extra power cable, not him.  He was obviously unaware of the dangers of relying on only one cable to charge your primary communication device.  And that's why I spent the money on this. I had had two main communication devices, computer and iPad, break in two different ways. That is bad news.  Also, now that I am ambulatory, a computer or even a full size iPad becomes quite bulky. A mini iPad is exactly the right size for aug comm, not too big or too small. Plus it is more affordable to get more storage space in one than a full sized one. I've had it for hours and am in love already.  It's such a perfect little thing.  And this time I got it a case that fits around it and seems fairly protective, and was actually free because Small Dog made it themselves.  And the case can have it stand upright or sideways. By the way never leave an annoying feeding tube alarm blaring when you're on the toilet.  Your cat might get annoyed and knock over a glass of water onto a bunch of important papers and stuff.  And this is a glass of water that we had cat-proofed fairly well, so doing this took some effort on her part (knocking over the obstacles in its way, then knocking over the glass of water).  When Fey is pissed, she doesn't just get mad, she gets even. But seriously if you're an ambulatory person considering an iPad versus an iPad Mini for a communication device, I'd strongly suggest going with the Mini, or at least trying out both in person before you decide.  There are drawbacks to the Mini, but I find them well worth the benefits.  Including the fact that even with the case on, holding it feels like holding a small book.  The iPad Air may be light as well, but it's bulky, and bulky becomes trickier to deal with the more walking you do.  It's not that I expect to literally walk and type at the same time, but I could walk and hit a number of important picture symbols at the same time, and that's important too. Unexpected money twice, followed by unexpected but amazing purchase twice:  rocking chair and iPad Mini.  I'm rocking in the rocking chair as I write this, and it's really nice to be able to rock without putting out a lot of physical effort to do so.  That's why my rocking stopped a few years ago except in extremely stressful situations: The adrenal insufficiency and myasthenia gravis just made it too exhausting, and my body stopped doing it.  I had no choice or say in the matter.  The rocking chair gives me some say again.  (Gone are the days when they got me a rocking chair so I would have a "socially acceptable" way to rock. This actually happened at a residential facility. And the iPad Mini is just wonderful for everything from a communication device to a way to work on my novel.  The two main apps I've used so far, are Proloquo2Go and Evernote.  Also Tumblr.

[withasmoothroundstone]

If you don't mind, could you share your thoughts about facilitated communication especially in relation to autism? I tried googling it but honestly I don't know how to tell the good articles from the bad. In any case thanks for taking the time to read this!

I believe that FC can be both valid and invalid when done with autistic people, as with all people.  And there's a huge number of reasons for both.  But one reason I know it can be valid, is that I've required similar assistance during the worst of my autistic catatonia, both with typing and with other movements.  And I know it's valid when I do it.  I've also had it be invalid when someone did it on me wrong, though.  It's a very touchy thing.  Someday I might write more on the topic.

Donna Williams has some interesting thoughts on ways it can go right and wrong, although I don't think she has the full measure of ways it can go right and wrong by a longshot:

http://soe.syr.edu/media/documents/2010/7/in_the_real_worldwilliams.pdf

[withasmoothroundstone]

Is it okay for someone who doesn't really need a piece of accessibility equipment to use it if it makes them feel better? I am autistic (formally diagnosed high-functioning but only because I'm considered an "achiever") and very well able to speak but I am carrying a netbook with speech synthesis software with me anywhere I go because being able to type out and re-read what I am about to say helps me not forgetting what I was talking about mid-sentence because I get distracted by something.

Different people will have different answers to this question.  But from my perspective, emphatically, yes.  It's okay to use any piece of technology for any reason, in my book, because there shouldn't be anything special about, say, a wheelchair, compared to a bicycle, that makes a wheelchair a restricted item and a bicycle not.

But even if I were to think assistive tech should be confined to disabled people, your use is a perfectly good use of it and you shouldn't feel bad about it.  If it makes communication easier in any way, then in a way you do probably need it.  Just because you're not 100% nonverbal 100% of the time doesn't mean you don't need aug comm software.  In fact the term "aug comm" is short for "augmentative and alternative communication," and the "augmentative" part means that it's used in addition to speech, not just in replacement of totally absent speech (which is what the "alternative" part would be).

In my book, like... it's even a totally valid use of aug comm if you just feel more like yourself when you're communicating that way, in a way that's pretty vague and undefined.  That's a very common thing for autistic people, even autistic people with very good verbal skills -- to feel like they are more expressive through typing, or more personally and emotionally expressive.

Anyway, this is a long-winded way of saying yes, use it however and whenever and whyever you want to.  And if anyone gives you flak, they're the problem, not you, period.  I get extremely angry at people, including some disabled people, who try to turn assistive technology into some sort of exclusive club only for those who "need it enough" (which is always defined by their assumptions, not by what the person actually needs).  And I have extra rage towards people who do that with communication technology, because communication technology is one thing that almost every autistic person I've ever met could use at one time or another (pretty much the only exceptions being people who are literally not capable of using the technology, but are capable of speech), but most are afraid to because of the reactions they'd get.  Or haven't even though it's possible because they think of AAC as only for people who can't speak at all, or who have more severe speech problems than they see themselves as having.

[withasmoothroundstone]

So at the courthouse...

I was using my iPad to communicate, because I didn't want to lug an entire heavy computer up the hill with me.

And as I was typing, the woman behind the desk did that thing.

She turned to my case manager and said:

"Oh wow it's so amazing that she has a thing like that.  I mean I've seen things where you talk and the computer writes words.  But I've never seen this.  And think what it would be like if she didn't have this.  It's so wonderful for her that this technology is available these days.  She certainly uses it so well."

And on.  And on.  And on.

I ignored it, I didn't have the energy to deal with it.

[withasmoothroundstone]

Important point of aug comm etiquette

It is very rude. Very fucking rude. And potentially triggering.

To use the fact that someone communicates by typing.

As an excuse to talk over them. Especially to yell louder than their speaker will go. Or find other ways to exploit the way their communication device works, in order to stop listening to what they are saying. Including looking away from a screen on purpose.

It doesn't matter how mad you are.

You COULD NOT manage these things with a nondisabled person, and if you tried they'd be able to do it right back to you.

If you do this, you are being a real fucking asshole. Because you're basically exploiting a difference in communication abilities to take your temper out on someone and do what is convenient to you, at their expense.

Same goes for telling them their communication takes too long, so your not going to listen. Except in true emergencies, and then you do it as tactfully as possible, apologize, and promise to listen later. And give them a chance to indicate how urgent their communication to you is.

Someone just did all of these things to me at once. It hurt more because I trusted her and liked her. And I'm now more triggered than I ever expected to be, given people do this all the time.

My case manager was present, and was shocked at her rudeness.

I'm trying really hard not to just curl up in a ball and cry, which is not at all my normal reaction to these things.

I think also because my friend is trying to instill in me some self respect, when normally I put up with this shit because I'm used to it.

But she'd never do that to someone she saw as an equal.

Ugh. I used to get mad that I couldn't yell back. Now I just want them not to yell in the first place.