Daily Archives: June 26, 2006

Autistic Aug Comm Users

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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.

Autistic AAC Users

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This is going to be a list of articles or websites by autistic people who use augmentative communication a significant amount of the time. There’s a few things I am not trying to do by writing this page:

  • I am not trying to do the “Wow, look at the amazing autistic specimen that writes!” zoo exhibit crud.
  • I am not trying to say that autistic people who largely use writing to communicate in the offline world, are somehow more autistic, or more correct about autism, or better than, or worse than, other autistic people.
  • I am not trying to agree with every single thing written by an autistic person who uses augmentative communication.

What I am trying to do is deal with a situation where people are willing to accept that I use aug comm successfully, but believe that I am unique, or rare, or the only one, or something else like that. I’m none of the above.

Some of the people on this list use aug comm exclusively. Some use it only some of the time. Some use it rapidly, some slowly, some different speeds at different times. Some can read out loud what they type, some cannot. Some started out able to speak and lost that ability either gradually or rapidly, some have never spoken, some cannot use speech in a communicative way, and some have always spoken but have never been comfortable with it for many uses. Some use physical or emotional support to point and some do not, many started with it and continued without. Some look at the keyboard, and some, regardless of number of fingers they use, do not. All of these things can be mixed and matched. So there’s a lot of diversity here.
Links in bold are the person’s website, which may contain many articles.

People and their websites and articles
Misc. People

Richard Attfield

Roy Bedward

Larry Bissonnette

Jamie Burke

Elana Connor

Robert Cutler

Kim Duff

Tyler Fihe

Peyton Goddard

Lincoln Grigsby

Eve Hanf-Enos

John Jameson

Sharisa Kochmeister

Schlomo Lowinger

Eugene Marcus

Tito Rajarshi Mukhopadhyay

Sarah Nettleton

David Newton

Tom Page

Nick Pentzell

Jeff Powell

Sandra Radisch

Chammi Rajapatirana

Heather Rossignol

Sue Rubin

Nick Russi

D.J. Savarese

Jeff Seeger

Jenn Seybert

Joel Smith

Sarah Stup

Ian Wetherbee

Organization Websites

Books

  • Understand: Fifty Memowriter Poems (David Eastham, 1985)
  • Wenn ich mit euch reden könnte … Ein autistischer Junge beschreibt sein Leben. (Dietmar Zöller, 1989)
  • Ich gebe nicht auf: Aufzeichnungen und Briefe eines autistischen jungen Mannes, der versucht, sich die Welt zu oeffnen. (Dietmar Zöller, 1992)
  • “ich will kein inmich mehr sein” – botschaften aus einem autistischen kerke. (Birger Sellin, 1993)
  • A Child of Eternity (Adriana Rocha, 1995)
  • I Don’t Want To Be Inside Me Anymore: Messages from an Autistic Mind (Birger Sellin, 1995)
  • Ich Deserteur einer artigen Autistenrasse. Neue Botschaften an das Volk der Oberwelt. (Birger Sellin, 1997)
  • Through the Eyes of Aliens: A Book About Autistic People (Jasmine O’Neill, 1998)
  • Lucy’s Story: Autism and Other Adventures (Lucy Blackman, 1999)
  • I Had No Means To Shout! (Charles Hale, 1999)
  • Ich Igelkind. Botschaften aus einer autistischen Welt. (Katja Rohde, 1999)
  • And Love Was All He Said: Growing Up Autistic (Michael J. O’Reilly, 2000)
  • The Light Within (Lincoln Grigsby, 2001)
  • Buntschatten und Fledermäuse. Leben in einer anderen Welt. (Axel Brauns, 2002)
  • The Vial (Chammi Rajapatirana, 2002)
  • Embracing the Sky (Craig Romkema, 2002)
  • Autismus und Körpersprache. Störungen der Signalverarbeitung zwischen Kopf und Körper. (Dietmar Zöller, 2001)
  • Caught Between Two Worlds: My Autistic Dilemma (Thomas Page, 2003)
  • “now you know me think more” (Ppinder Hundal, 2003)
  • Silent Words: Forever Friends (David Eastham, 1990)
  • Beyond the Silence: My Life, the World and Autism (Tito Mukhopadhyay, 2000)
  • Wasted Talent: Musings of an Autistic (Krishna Narayanan, 2003)
  • The Gold of the Sunbeams And Other Stories (Tito Mukhopadhyay, 2006)
  • Do-Si-Do With Autism (Sarah Stup, 2006)
  • The Road Trip: Life With Autism (J. Kevin Vasey, 2005)

Anthologies (may have both aug comm users and others as contributors):

  • Autism and the Myth of the Person Alone (Douglas Biklen, 2005)
  • Sharing Our Wisdom: A Collection of Presentations by People within the Autism Spectrum (Gail Gillingham and Sandra McClennan, 2004)

Comments from when this was a page, not a post:

  1. June 26, 2006 at 10:57 am
    [...] This is the permanent page on this blog I’m using for this at the moment. [...]
  2. Ann says:
    June 26, 2006 at 4:29 pm

    THANK YOU THANK YOU !!!! I will be definitely linking to this page from my website. With all these resources hopefully I wont be constantly bugging you with all my questions !! smile.

  3. Linda says:
    June 26, 2006 at 9:06 pm

    I was entranced by your story while driving home from the library. I work for a young lady (15) who essentially does not communicate verbally, but uses a communication device (she hates that name – she calls it her talker) using a reflective dot to activate her choices. She is wheelchair bound, quadreplegic, yet totally aware of the world around her and VERY definite about her likes and dislikes. Her Dad is her primary caregiver, and I did not know what LOVE was until I met the two of them. Everyone is different, and Vive Le differance! I also care for my 90 year old mother who is legally blind, and post-stroke – she can verbalize her needs and wants totally with no reservations. I am so impressed with your intelligence.

  4. June 27, 2006 at 8:41 am

    [...] Amanda is one of those autistics that certain people don’t believe exist or can communicate – she is an autistic person who is typically referred to as ‘low functioning’ just like my own daughter. This is because she doesn’t speak. When you hear Amanda, you will hear her fingers on her keyboard. Here is a list of other autistic people who are non-verbal and considered ‘low functionning’. [...]

  5. Michael says:
    August 30, 2006 at 5:43 pm

    I was very excited to come across your page. My son is seven (eight this month) and we learned he was able to spell and was extremely intelligent when he was 3 1/2. He is not able to speak but has been using a letter board and a Dynavox since then. We have many transcripts from his neuroligic music therapy sessions expressing frustration, anger, sadness and a wicked sense of sarcasm. Without the FC we wouldn’t know what a great child we have and how gifted all of us are for him.

  6. Samuel says:
    April 13, 2007 at 11:45 pm

    Hello, I just stumbled upon this great AAC resource for Mac OSX called Verbalize and thought you might like to check it out. http://www.apple.com/downloads/macosx/productivity_tools/verbalize.html

    I just posted a low cost text to speech idea using Verbalize, you might be interested in checking out, on my new blog. alltogether.wordpress.com

    From, Sam

  7. Craig Chadwick says:
    June 22, 2007 at 3:26 pm

    I posted earlier under old email craigwchad@frys.com. Anyway I’m so angry I could spit. The county found some funding to purchase my son augmentative comm device. Just notified that the State is now saying the communication device is not a “health or safety” issue and they are not going to fund it. Anybody dealt with that? How you shame bureaucrats like this or educate them into doing the right thing?

  8. Craig Chadwick says:
    June 22, 2007 at 3:37 pm

    ps I’m now mrplutodog@peoplepc.com That old account kept bouncing in and outgoing email.

  9. June 22, 2007 at 3:38 pm

    In places with regulations like that, your speech pathologist/doctor/etc have to justify it specifically in terms of its use in medical communication situations, and show that other communication methods will not work.

  10. June 22, 2007 at 6:02 pm

    Craig, I don’t blame you for being so angry. Access to some means of communication is a fundamental human right, without which the person will find it immensely difficult to advocate for themselves in obtaining all their OTHER fundamental human rights. That alone should be enough to justify funding, especially if it can be shown that a given augmented approach clearly works better than other approaches at least in certain contexts. It sounds like there needs to be some policy changes to make it easier to obtain communication-related funding for people who need it.

    I know your most immediate concern is getting your son’s needs met NOW. But I can’t help ALSO thinking of the larger picture. Is there a way you can get together with other parents and with adults who use augmented communication to work together in advocating for policy reform? Not limited to autistic children and adults — ALL users of augmented communication.

  11. Craig Chadwick says:
    June 28, 2007 at 8:05 pm

    When you say “in terms of its use in medical communication situations”, I hope you don’t just mean in terms of visits to the doctor’s office. Even narrowing it to the “medical communication” thing which leaves out a lot of health/safety issues, I would think it ought to be broader than that, especially in terms of prevention and maintaining good health when you can’t reliably communicate other ways.

A couple handy lists for dismissing autistic viewpoints.

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Too autistic to know what you’re talking about. Not autistic enough to know what you’re talking about.
  • Low-functioning
  • Non-communicative
  • Savant (if used to show that whatever your talents are, you’re really clueless)
  • Lacking empathy
  • Lacking understanding of others’ perspectives
  • Black and white thinking
  • Ineducable
  • Mentally retarded
  • No Theory of Mind/Mind-blind
  • Too emotionless
  • Incapable of thought
  • Empty
  • Vegetative
  • Lacking self-awareness
  • Perseveration
  • Rigidity
  • Lots of sentences starting with “S/he will never…”
  • Appears to be able to do this, but can’t really.
  • Too pure, gentle, sweet, and passive to ever object to anything
  • High-functioning
  • Asperger’s
  • Not really autistic at all
  • Misdiagnosed
  • Malingering
  • Savant (if used to use your talents to dismiss your claim to being an autistic person)
  • Attention-seeking
  • Manipulative
  • But you’re toilet-trained, aren’t you???
  • Clearly highly intelligent
  • Verbal
  • Too concerned about others’ problems to be autistic
  • Too caring to be autistic
  • Too concerned with what people think of you to be autistic
  • Pretends to be unable to do this, but really can.
  • Clearly capable of complex, conscious thought
  • Too self-aware to be autistic
  • Self-diagnosed
  • Too angry to be as gentle, sweet, pure, passive, and otherwise emotionally one-dimensional in favor of the person speaking, as real autistic people.

The interesting thing here is that if you actually go back through what has been said to dismiss the viewpoints of autistic people, you’ll see these things being used simultanenously. You’ll see that a person will use back-handed compliments about a person’s ‘intelligence’ and ‘verbal skills’ to distance that person in people’s minds from the stereotype of autistic people, may even question openly whether the person is autistic, and then at the very same time will say that the person engages in black and white thinking, lacks empathy, and clearly has no compassion. This of course happened to Michelle Dawson recently, but it’s been going on for a very long time, as has my desire to document it in a list in this format.

Another very interesting thing about these list is the way that the apparent meaning behind the rhetoric changes depending on which side is being used. If a person is argued to be too autistic to understand what is going on, the implication is that autistic people cannot understand what is going on at all, and therefore always need non-autistic people to make the decisions about us. If a person is argued to be not autistic enough to understand what is going on, the implication is that only someone more autistic would be qualified to speak on the matter (in which case, the non-autistic person has even fewer qualifications themselves).

These implications actually oppose each other, but they serve their purpose. Their purpose is not to illuminate anything useful about the people they are being used on. Their purpose is instead to be a fancy way of shutting autistic people up. Since many people, particularly people unfamiliar with autistic people, are swayed by arguments like this, it becomes a handy way to defend anything that autistic people oppose in large numbers. Simply declare us, one way or the other, unfit to comment, and go on saying whatever you were saying to begin with. The whole point seems to be to push us out of the way.

Of course, non-autistic people are not the only ones to use this kind of rhetoric. There are plenty of autistic people who do so as well, but that takes on a slightly different form, and I think I’ve written a fair bit about that already.