Autistic Aug Comm Users

Standard

I’m starting to put together a page of links to stuff (webpages and books) written by autistic people who use augmentative communication (at least a good chunk of the time, even when not always). The motivation behind this is similar to my motivation behind putting together the Autistic Authors Booklist, which was largely because people were always acting like only three autistic authors existed and it was getting really tiresome when I had books by easily dozens, and also because people were under the impression that vastly more female than male authors existed which also turned out not to be the case.

In this case, I recently got a comment along the lines of, “So if you communicate by typing, where are the rest of the people like you?” And I realized I’d known people before who’d never heard of any auties who couldn’t speak having written any books.

There are a lot of them, with varying degrees of usable speech, varying times of acquiring speech, varying kinds of communication devices, varying levels of loss of speech, various levels of physical and/or emotional independence accessing communication devices, etc. And of course most of those can vary within one person, so there’s people who speak and type independently and use facilitated communication, and it can surprise people in which order some learned.

This is the permanent page on this blog I’m using for this at the moment.

That’s the list I’ve come up with so far.

I know I’m leaving a lot of people out. It was easiest to find FC users because of the FC Institute’s website having a lot of their writing. I know there’s others, as well as people who don’t use FC at all but use augmentative communication. I’d be interested in knowing who I missed (with links to their writing) so I can add them to that list, as well as any writing I’ve missed by the people on the list already.

And as reference, one thing I’m not doing is trying to say that this makes anyone more or less “really” autistic, more or less credible, or anything else. So I’m not too interested in engaging in either “This person doesn’t really type” discussions, or “Wow these are the real autistics and all those speaking kinds are just pretending or not as knowledgeable about autism” discussions. I hear enough of both of those the rest of the time. I get enough questions about whether I actually exist or not that I don’t want to do that to anyone else. And having read the writing of a lot of autistic people who’re regarded as all over the “spectrum”, I’ve seen what I regard as both clueful and clueless stuff both coming from all over people’s perceived positions on said landscape. So no need to say that I’m going to disregard all people who communicate in X, Y, or Z fashion.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

10 responses »

  1. Hi my name is Claudia And my son is 6 years old. He is learning to use the FCC board. We started to use it about a month ago, so he doesn’t master it.
    Our First language is spanish but my son , his name is antonio really likes english.
    Can you give us some tips on how long should i insist to him on to tell me something…It is frustrating for him I know but also to mom.
    I just want to help him.
    I believe he can type because he reads my hand writting. We have been using a choice board before staring with the fcc board.

  2. Just heard the NPR story, great job. I am also somewhat nonverbal, in that written communication is my preference when given a choice. I’m not always given that choice, but if I am I do eschew speech. Again, nice job on the NPR interview.

  3. Claudia: I don’t know how long you should do that, but you might check some of the aug comm or FC organizations who would know more about it.

    Meredith: Glad you heard it. Where I’m located, I think they might have skipped it in favor of a different news story (unless they don’t do the same order as on the website: I heard them saying something about autism coming up, but they never did anything, and now they’re on to the rich guy giving out money or something), but “All Things Considered” isn’t over yet, so I’m still listening. If I don’t hear it on the radio, I’ll catch it on the website.

  4. I like the booklist and I’d like to link to it from the astraeasweb.net booklist if I may. Also I am considering starting a new page under Politics for autism links — not just have them on the badpsych page.

  5. Greetings from the Deep South (which is usually ANYTHING but deep)!

    My name is Anton, and I am the proud father of a 2.5-year old son who was diagnosed very early in his life with Autism. I actually suspected Autism around his first birthday…he was very classical in his presentation: self-isolating, never responded to his name, no eye contact, repetitive stacking of blocks for hours on end, hand flapping, out of control behavior, screaming, etc. By the time he was 15-months old I demanded that our pediatrician have him evaluated. Long story short, he was diagnosed as profoundly Autistic…one of the most sever cases Charleston County had seen.

    We immediately got him into a very structured ABA program, with speech and OT added as well. Probably the most intense thing we did was get him on a GFCF diet…we saw changes in him within a week’s time.

    Tony has had an incredible year of development, and while he still exhibits many Autistic traits (he’s obsessed with crayons and car rides) he has learned to use language quite adeptly, and has turned into a very social being, most of the time. He still sometimes freaks out around people he doesn’t know, or in noisy/energetic situations, but we just deal with that.

    I like what you’ve done with your site…lots and lots and LOTS of good links and interesting info. Thank you for sharing it with all of us.

    I actually came to the site by way of a Washington Post article which mentioned FC.

    Any how…just wanted to leave a quick note and say hi, and THANKS!

    Very best,
    Anton – Tony’s daddy

  6. just heard you on the NPR show–i have a dear friend who is “on the spectrum”. wonderful blog, fabulous writing. keep it up!

  7. I, too, heard, enjoyed and was (as usual) enlightened a bit by what you said. I particularly liked the way they caught the sound of your typing. I can’t do it that fast, and I do 10-finger touch typing. But then I’m *mostly normal* (quoting myself).

    Snork! Ya did good, gal!

  8. For reference, I was 10-finger touch typing, he must have gotten confused between the 1-finger touch typing I demonstrated on the video and the 10-finger touch typing I was using on the air. (I do both, depending on motor skills that day.)

  9. Pingback: I Have Something to Tell You « Andrea’s Buzzing About:

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