AAC Campaign--Get people talking about AAC and help more people get access to communication technology, training and ongoing support

We are continuing our efforts to bring awareness and understanding of the need for anyone who has limited communication to gain access to other ways to communicate, termed AAC (augmentative and alternative communication methods). These methods include other ways to speak, write and read such as electronic talking aids, computers, tablet computers, boards and books with pictures, words, and letters, Talking Mats, Communication Passports, eye-gaze, partner-assisted scanning, facilitated communication training, Rapid Prompting Method, gesture and sign language, and captioning. We encourage you to learn more and to teach others about AAC methods and how they can help with expression and with understanding what is being said.

Here are some ideas for learning more about AAC, increasing the visibility of AAC and people who use it, and helping people who use AAC to teach others about communication. Invite a person who uses AAC to make a speech or other presentation. Invite a person who uses AAC to demonstrate their communication method and to have a conversation so that others may learn better to interact with and listen to people who use various AAC systems. Host a film about AAC and invite people who use AAC to share their experiences with the audience. Connect people who are new to using AAC to communicate with mentors who are experienced users of AAC. Work with people who use AAC and their families and supporters to organize fundraising events to raise funds for AAC devices in your local area and to share information about AAC. Get local news media to interview people who use AAC and to print stories about AAC technology, the numbers of people who need AAC but may not have access, the lack of professionals trained in AAC, and related issues.

AAC Visibility and Awareness Project

Wednesday, October 23, 2013

Blogs and websites with writings by people who use AAC to communicate and their parents and supporters

Blogs by individuals who use AAC

Lynn Aquilana – Mill-Pinna tieghi . . . (in Maltese)

Amanda Baggs – Ballastexistenz

Agnes Bal – From the Cradle to the University

Heathar Ashley Barrett – Heathar Ashley

Larry Bissonnette – Larry’s Blog

Andrew Bloomfield, Andrew’s Bridges 

Brayden – Braden’s Blog

James Brosnan – Jumping Spastics

Cindi’s Blog

Elana Rose Connor – Elana Rose

Sydney Edmond – Sydney’s Writing

Carly Fleischmann – Carly’s Voice

Henry Frost

Peyton Goddard – Cherubs Wired Differently

Emma Green – Emma’s Blog

Thiandi Grooff

Joshua Harris – Joshua’s Planet

Koren Henning – Koren’s Korner

Glenda Watson Hyatt – Do It Myself Blog

Marlena Katene, theaacjournalist, YouTube channel  http://www.youtube.com/user/theaacjournalist?feature=

Kati – Kati’s Blog

Ido Kedar – Ido in Autismland

Brian Kajiyama – Brian’s Ramblings

Ben Kingston – The True Ben Kingston

Chris Klein – Become AAC

Sharisa Kochmeister – My Surreal Life

Lateef McLeod - Lateef’s Thoughts

Beth Moulam – Beth Moulam and LIFE

Chris Patton, Lopsided Heart Creations – Poetry by Chris

Chandima (Chammi) Rajapatirana  

Michael Brian Reed

Barb Rentenbach 

Lee Ridley – Lost Voice Guy

Peter Rowe

Sue Rubin

Darryl Sellwood

Amy Sequenzia – Nonspeaking Autistic Speaking

Jeremy Sicile-Kira – Jeremy’s Vision

Sean Sokler – Sean’s Shoutouts

Simon Stevens – Simon Stevens Viewpoint

Sarah Stup – Are Your Eyes Listening?

Ryan Tilton - Non-Speaking Not Silent: AAC Apps, Service Dogs, My Experiences as an Autistic Female
http://nonspeakingnotsilent.blogspot.com/ 

Tracy Thresher – Tracy’s Blog

Karly Wahlin – Inspired by Love

Lydia Wayman – Autistic Speaks

Mike “X” – Journal of an Autist


Blogs and websites featuring writings by individuals who use AAC:

1 Voice Communicating Together Blog

Bridges-Over-Barriers Communication Support Initiative – newsletters  

The Communication Mentors Network

ISAAC – AAC Awareness – Archive Material
·       2010 – Many Cultures, One Dream:  Communication Without Barriers, Story Collection 2010 Submissions
·       2009 – Many Methods, One Goal:  To Communicate, 2009 Story Submissions and Video Collection
·       2008 – Many Stories, One Voice AAC Story Collection

Kilometres for Communication – Stories

Let’s Talk AAC blog:  Communicators in Action

Pittsburgh Employment Conference Proceedings 1995-2011 at the SHOUT website

Watch Our Words, a group of FC typers and facilitators in Colorado. In-home and large group trainings are conducted by FC typers with the help of their facilitators. Their website holds some of their writings—See the “We speak” section. Chris Patton, Sharisa Joy Kochmeister, Jaison Hart, Mike Hoover.    http://www.wowcolorado.org/index.htm

The Writers Brigade


Blogs and websites by parents and others who write about personal experiences with AAC

Larry Blumenthal – Life with Clay

Char Brandl – Grandma Char’s Lessons Learned

Katie Clarke

Lisa Domican – The Grace App Blog

Hollly Gray – Caleigh’s Corner

Alyssa Hillary – Yes, That Too

Mary Kay – You Don’t Say

Heather Kim Lanier – Star in Her Eye

Merry Knight – ABCs and AAC

Sabra Murphy – Assume Intelligence


Sabra Murphy and Emma Murphy
Paper Kids blog

Neider Family – Uncommon Sense

Niksmom – Maternal Instincts:  Flying by the Seat of my Pants

On the Train with Sophie (by Anonymous)

Lisa Reyes – Faith, Hope, and Love . . . with Autism

Rob Rummel-Hudson – Fighting Monsters with Rubber Swords  

Julie Shaffner – Understanding Lu

Deanne Shoyer – Small but Kinda Mighty

Christine Stephan – Day Sixty Seven


Heidi Thompson – Junior’s Voice

Elizabeth Vosseller - Musings and Mutterings about Speech, Language, and Technology to Improve Communication

Ariane Zurcher - Emma’s Hope Book


Blogs and Websites with collections of writings by parents and others who write about personal experiences with AAC

The Communication Mentors Network



List assembled by Judy C. Bailey.  Updated October 22, 2014.


Friday, August 9, 2013

Some government programs implementing or supporting facilitated communication (not a comprehensive list)

Here is a brief list of some government programs or government-funded programs that are implementing or supporting facilitated communication training around the world (not a comprehensive list): 

State of Massachusetts, Department of Elementary and Secondary Education.  Facilitated Communication is included in the Guidelines for Preparation of Teachers of Students with Moderate and Severe Disabilities: "Approved programs should ensure that teachers of students with moderate or severe disabilities: 1. understand educational, communication and professional terminology and concepts related to augmentative and alternative communication and assistive technologies; 2. are familiar with the range of AAC devices and methodologies as defined in 603 CMR 7.02, and facilitated communication, that can be used to effectively teach students. Some examples of ACC devices and methodologies include: Communication Aids--Picture Exchange Communication System (PECS)...Dynamic displays...Auditory Scanning...Facilitated communication..."

Programa de Habilitaci√≥n del Lenguaje a trav√©s de la Escritura en Autismo y otros Trastornos Severos del Desarrollo.  This program is now an Extension Program at the School of Psychology of the University of Buenos Aires, and as such has undergone stringent reviews.  Below is the link. 
Director: Lic. Daniel Orlievsky (who has published widely in Spanish language journals on his research on facilitated communication)
http://www.psi.uba.ar/extension.php?var=extension/programas/orlievsky.php

Italy has four accredited FC centers:  the Centro Studi e Ricerca in Neuroriabilitazione CNAPP in Rome, the Centro Studi sulla Comunicazione Facilitata – W.O.C.E. in Zoagli (GE), the Instituto M.P.P. Padri Trinitari A. Quarto di Palo in Andria (BA), and the Centro Sperimentale per i Disturbi dello Sviluppo e della Comunicazione in Padua.  These are noted in the chapter “Statistical Analysis of Textual Data from Corpora of Written Communication—New Results from an Italian Interdisciplinary Research Program (EASIEST) by Lorenzo Bernardi and Arjuna Tuzzi, University of Padua, Italy, in the book A Comprehensive Book on Autism Spectrum Disorders,in the Acknowledgements on page 429. 

Vermont Communication Task Force



Research Articles on Facilitated Communication focusing on authorship and other issues

There are numerous research articles which demonstrate the value of facilitated communication(FC) training methods or supported typing for at least some individuals.  In some of these, individuals who type with support have had success in demonstrating that they themselves were the authors of what was typed.  In other research, individuals who use FC training have demonstrated literacy and increased speech.  These articles and many personal reports of individuals and families are not always noted in research reviews or discussions of facilitated communication.  

For your easy reference, we have listed below articles which show the value of FC for some individuals.  In these, individuals have been successful in passing information that is unknown to their facilitator, i.e. have demonstrated authorship, or have demonstrated other gains due to FC training.  The first list includes a few qualitative studies and articles on literacy and other gains.  The second list has qualitative and quantitative research studies published in English, and the third list has research articles published in Spanish (with no translation available to date).  

Research Studies and Other Articles on Facilitated Communication (FC) and Related Issues, including qualitative studies that involve speech, literacy, and evidence. 

Note:  This is not an exhaustive list, but it provides some good examples.

Christine Ashby (2011) Whose "Voice" Is It Anyway?: Giving Voice And Qualitative Research Involving Individuals That Type To Communicate.  Disability Studies Quarterly, Vol. 31, No 4.

Rosemary Crossley and Chris Borthwick What constitutes evidence?  Why the debate about facilitated communication is important for ISAAC.  Paper written for the proceedings of the Seventh Biennial ISAAC Research Symposium, Odense, Denmark, August 2002. 

Christi Kasa-Hendrickson, Alicia A. Broderick, and Darlene Hanson (2009)
Sorting out Speech: Understanding Multiple Methods of Communication
for Persons with Autism and Other Developmental Disabilities.  The Journal of Developmental Processes, Vol. 4(2), pp. 116-133.   

Marjorie F. Olney (2001)  Evidence of literacy in individuals labeled with mental retardation.  Disability Studies Quarterly:  Spring 2001, Vol. 21, No. 2. 

Zachary Rossetti, Christine Ashby, Katrina Arndt, Marilyn Chadwick, Maho Kasahara, and John O'Brien (2008) “I Like Others to Not Try to Fix Me”: Agency, Independence, and Autism. Intellectual and Developmental Disabilities: October 2008, Vol. 46, No. 5, pp. 364-375.


Research Articles on Facilitated Communication focusing on authorship and showing evidence of authorship 

English Language Research Articles

Bernardi, L. & Tuzzi, A. (2011) Analyzing written communication in AAC contexts: a statistical perspective. Augmentative and Alternative Communication, 27 (3), 183-194.

Bernardi, L. & Tuzzi, A. (2011) Statistical Analysis of Textual Data from Corpora of Written Communication – New Results from an Italian Interdisciplinary Research Program (EASIEST). In Mohammad-Reza Mohammadi (Ed.), A Comprehensive Book on Autism Spectrum Disorders (pp. 413-434)  InTech. 

Cardinal, D. N., Hanson, D. & Wakeham, J.  (1996) Investigation of authorship in facilitated communication. Mental Retardation, 34, 231-242. 

Emerson, A., Grayson, A. & Griffiths, A. (2011) Can’t or won’t? Evidence relating to authorship in facilitated communication.  International Journal of Language & Communication Disorders, 15 (3), 1-16. 

Grayson, A., Emerson, A., Howard-Jones, P. & O’Neil, L. (2011) Hidden communicative competence: Case study evidence using eye-tracking and video analysis.  Autism, 15(3), 1-16. 

Janzen-Wilde, M., Ducham, L. & Felson, J. (1996) Successful use of facilitated communication with an oral child. Journal of Speech & Hearing Research, 38 (3), 658-676. 

Niemi, J. & Ka”rna”-Lin, E. (2002) Grammar and lexicon in facilitated communication: A linguistic authorship analysis in a Finnish case. Mental Retardation, 40 (5), 347-357. 

Ogletree, B. T. & Hamtil, A.  (1993) Facilitated Communication: A Naturalistic Validation Method.  Focus on Autistic Behavior, 8 (4), 1-10.  

Sheehan, C. M. & Matuozzi, R. T.  (1996) Investigation of the validity of facilitated communication through the disclosure of unknown information. Mental Retardation, 34, 94-107. 

Tuzzi, A. (2009) Grammar and lexicon in individuals with autism: A quantitative analysis of a large Italian corpus. Intellectual and Developmental Disabilities, 47 (5), 373-385. 

Weiss, M. J. S., Wagner, S. H. & Bauman, M. L. (1996) A validated case study of facilitated communication. Mental Retardation, 34, 220-230. 





Saturday, April 27, 2013


Witness to Silencing – We remember and work with hope

Several years ago, I witnessed a silencing of people who were working to learn to communicate independently by typing with support using methods of Facilitated Communication (FC) Training.  These training methods were developed to help individuals with limited effective communication to improve their pointing skills so that they could point to use communication aids and eventually type independently to communicate.  

When questions about the method of Facilitated Communication Training arose, some organizations and schools unilaterally and quite abruptly stopped using FC training methods, rather than consulting with the individuals and families who were using the method and determining with them how effective this method was for them. The questions grew from a small number of court cases in which typed statements were not proven to be true (although in some court cases they were proven true) and from research studies which indicated that sometimes what facilitated communicators typed was influenced by their facilitators, although this was not always the case.  When FC training was stopped, many individuals were left without a way to communicate clearly or even to work to improve their communication.  For those of us who witnessed in horror this silencing, the effects were and still are deeply troubling.  For those who were silenced, we have few reports on their reactions, as most have had no way to express them.  In some cases, families had not learned the method before it was halted for their family member, so they did not carry on the support to communicate by typing. 

These two poems are dedicated to all the people who were silenced when their access to communication via facilitated communication training methods was cut off and to the hope that they will once again someday communicate using a method which they choose and which works for them.  They are not forgotten. 


Freedom Quest

In an echoing silence 
a once heard, 
now hushed, 
struggling, tapping voice
waits.  

Active, seeking, once-typing fingers
retract to fidget, fist and plot.    
No trusted ally closed
the exit ramp from
silence.

Accusers believed
his thoughts weren't there—
not really.
Not after all those silent
years.

Surely it was an imagining,
A wishful hoping . . .
Like an alien sighting.
Not real . . . not possible . . .
surely?

Too late to reconsider. 
Aspersions cast. 
Exit barred.  
No wistful rethinking.  
Done.  Past.    

A timid soul back in hiding
'neath layers of the onion,
Deeply burrowed away
from his wishful world
of voice, 

Grieving the lost trust,
dashed hopes,
and vanished  
escape route from
silence,

Still plots again
His freedom quest
in the echoing company 
of loud silent 
thoughts. 


This poem is dedicated to all the people who were silenced when their access to communication via facilitated communication training methods was cut off—for some overnight without warning and without recourse or appeal.  You are not forgotten. 

Copyright 2017 Judy C. Bailey





Unforgotten

When the bars of silence closed in again
on the once unspeaking soul, 
Who heard the pleaful gasp
from across the chasmous divide? 

When the tap tapping of lettered speech
was vanquished, 
none could peer into that silent realm
where reverberating thoughts
murmured in captivity—
meandering, drifting, racing, stumbling,
diverting inward, lost from their tenuous
tapping route to voiceless speech.
Sequestered in an instant.  No exit.  
Bridge of connection removed.
“Leap across the chasm,” authorities advised—
an impossible feat—
“Or stay clear and wait”,
came the unwelcome call. 
No courage at hand today.  

Predictability, that honored creed,
had cautioned pause, refrain. 
Await a future parole to speak,
through a sanctioned and lauded exit-- 
albeit eons hence in others' lifetimes—
not in this soul’s dwindling years.
No, not now. Not on this watch.
No detours to full scale expression for this one. 
"Yes or no" and "this or that" will fill
the speechless hopeful’s dance card. 

The fearsome cautionary verdict,
deemed judicious and safe by some,
Did leap its bounds
to squelch the tapping rightful voice.
Thoughts then caught in suspension
could not appeal, nor engage the crowd,
Nor span the gap to freedom
from the engulfing grasp
of the “silent abyss”.

Champions will arise to tell the story,
So eyes will see and ears hear
the heartful tale of a longed-for voice
gained, then lost.

Chattering souls with yakkety voices will halt
to bear witness and to champion
the racing, stumbling, meandering efforts 
of fingers that edge tappingly toward
an emboldened lettered voice that dares
to lead a dance of joyful conversation.    
 
They will come. 
Until then . . .
the unforgotten voice will wait
and plot to soar once more.    

            

This poem is dedicated to all the people who were silenced when their access to communication via facilitated communication training methods was cut off—for some overnight without warning and without recourse or appeal.  You are not forgotten. 

Note:  The “silent abyss” is a term coined and used by the poet Chandima Rajapatirana, in writing about his journey to communication by typing.  It is used here in great respect for his love of language and his ardent advocacy for a voice for all.  

Copyright 2017  Judy C. Bailey