Jun26

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.

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About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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