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)

http://lynnaquilina.wordpress.com/page/5/

Amanda Baggs – Ballastexistenz

http://ballastexistenz.wordpress.com/

Agnes Bal – From the Cradle to the University (in Polish) 

http://oddajemyprocent.blogspot.com/2013_09_01_archive.html

Heathar Ashley Barrett – Twitter @Heatharashley 

https://twitter.com/heatharashley?lang=en

Larry Bissonnette – Larry’s Blog

https://www.wretchesandjabberers.org/larry-and-tracy/larry-blog/

Andrew Bloomfield, Andrew’s Bridges 

http://andrewsbridges.blogspot.com/p/who-am-i-about-myself.html

Niko Boskovic 
https://nikoboskovic.wordpress.com/

Brayden – Brayden’s Blog

http://braydenfsblog.weebly.com/blog

James Brosnan – Jumping Spastics

http://jumpingspastics.blogspot.com/2011/01/voice-and-its-channels.html 

Cindi’s Blog

http://cindisblogtwo.weebly.com/   

Elana Rose Connor – Elana Rose

https://www.elanarose.com/blog/page/1

Sydney Edmond – Sydney’s Writing

http://www.aut2communicate.com/Sydneys_Poetry.html 

Carly Fleischmann – Carly’s Voice

http://carlysvoice.com/home/aboutcarly/

Henry Frost

http://ollibean.com/tag/henry-frost/

Peyton Goddard – Peyton Goddard: Advocate for Inclusion

http://peytongoddard.com/

Thiandi Grooff

http://www.thiandigrooff.nl/

Growing Kids Therapy Center blog
https://growingkidstherapy.wordpress.com/

Joshua Harris – Joshua’s Planet

http://www.joshuasplanet.com/index.html

Koren Henning – Koren’s Korner

http://korenskorner.wordpress.com/

Glenda Watson Hyatt – Do It Myself Blog

http://www.doitmyselfblog.com/

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

Kati – Kati’s Blog

http://katilea.wordpress.com/about/

Ido Kedar – Ido in Autismland

http://idoinautismland.blogspot.com/

Brian Kajiyama – Brian’s Ramblings

http://bkajiyama.blogspot.com/

Ben Kingston – The True Ben Kingston

http://thetruebenkingston.blogspot.com/

Chris Klein – No Barriers 

http://www.nobarriersusa.org/people/chris-klein/

Sharisa Kochmeister – My Surreal Life

http://sharisa-kochmeister.blogspot.com/

Lateef McLeod - Lateef’s Thoughts

http://teefdabiggafigga.blogspot.com/   

Beth Moulam – Beth Moulam and LIFE

http://www.bethmoulam.com/ 

Chris Patton, Lopsided Heart Creations – Poetry by Chris

https://www.lopsidedheartcreations.com/

Chandima (Chammi) Rajapatirana  

http://easesrilanka.org/

Michael Brian Reed

http://michaelreedsblog.blogspot.com/ 

Barb Rentenbach 

http://muleandmuseproductions.com/ 

http://muleandmuseproductions.com/blog/  

Lee Ridley – Lost Voice Guy

https://www.facebook.com/LostVoiceGuy

Peter Rowe

http://peter-rowe.info/ 

Sue Rubin

www.sue-rubin.org

Darryl Sellwood

http://thedazz.com/ 

Amy Sequenzia – Nonspeaking Autistic Speaking

http://nonspeakingautisticspeaking.blogspot.com/

Jeremy Sicile-Kira – Jeremy’s Vision

http://www.jeremysvision.com/ 

Sean Sokler – Sean’s Shoutouts

http://seansshoutouts.blogspot.com/ 

Simon Stevens – Simon Stevens Viewpoint

http://simonstevensviewpoint.blogspot.co.uk/ 

Sarah Stup – Are Your Eyes Listening?

http://sarahstup.com/blog/2013/06/sarah-real-true-and-shy/

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

https://www.wretchesandjabberers.org/larry-and-tracy/tracy-advocacy/

Karly Wahlin – Inspired by Love

http://spiritdances.wordpress.com/

Lydia Wayman – Autistic Speaks

http://autisticspeaks.wordpress.com/ 

Mike “X” – Journal of an Autist

http://journalofanautist.blogspot.com/

Blogs and websites featuring writings by individuals who use AAC:

1 Voice Communicating Together Blog

http://www.1voice.info/using-social-media-and-internet-my-dynavox

Bridges-Over-Barriers Communication Support Initiative – newsletters  

http://www.ont-autism.uoguelph.ca/bridges.shtml

The Communication Mentors Network

http://www.communicationmentors.org/stories.htm

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

https://www.isaac-online.org/english/aac-awareness/archive-material/ 

Kilometres for Communication – Stories

http://kilometresforcommunication.com/stories/ 

Let’s Talk AAC blog:  Communicators in Action

https://aaclanguagelab.com/blog/category/communicators-in-action

Pittsburgh Employment Conference Proceedings 1995-2011 at the SHOUT website

http://www.shoutaac.org/pastpecconferences.htm 

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

http://aac-rerc.psu.edu/index.php/projects/show/id/16

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

Larry Blumenthal – Life with Clay

http://lifewithclay.com/ 

Char Brandl – Grandma Char’s Lessons Learned

http://www.grandmacharslessonslearned.blogspot.com/

Katie Clarke

http://katieclarke2014.wordpress.com/

Lisa Domican – The Grace App Blog

http://www.graceapp.com/blog/

Hollly Gray – Caleigh’s Corner

http://caleighscorner.com/ 

Alyssa Hillary – Yes, That Too

http://yesthattoo.blogspot.com/  

Mary Kay – You Don’t Say

http://www.youdontsayaac.com/?page_id=25

Heather Kim Lanier – Star in Her Eye

http://starinhereye.wordpress.com/  

Merry Knight – ABCs and AAC

http://aacabc.blogspot.com/2014/10/what-aac-does-for-my-verbal-child.html

Sabra Murphy – Assume Intelligence

http://assumeintelligence.org/

Murphy the musical
http://murphythemusical.com/2012/01/16/support-for-facilitated-communication/

Sabra Murphy and Emma Murphy

Paper Kids blog

https://paperkids.wordpress.com/about/

Neider Family – Uncommon Sense

http://niederfamily.blogspot.ca/

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

http://maternalinstincts.wordpress.com/ 

On the Train with Sophie (by Anonymous)

http://www.onthetrainwithsophie.com/p/why-anonymous.html

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

http://faithhopeloveautism.blogspot.com/

Rob Rummel-Hudson – Fighting Monsters with Rubber Swords  

http://belovedmonsterandme.blogspot.com/

Julie Shaffner – Understanding Lu

http://understandinglu.blogspot.com/

Deanne Shoyer – Small but Kinda Mighty

http://smallbutkindamighty.com/blog-home/

Christine Stephan – Day Sixty Seven

http://daysixtyseven.blogspot.com/

Heidi Thompson – Junior’s Voice

http://juniorsvoice.blogspot.com.au/

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

http://growingkidstherapy.wordpress.com/ 

Ariane Zurcher - Emma’s Hope Book

www.emmashopebook.com

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

The Communication Mentors Network

http://www.communicationmentors.org/stories.htm

List assembled by Judy C. Bailey.  Updated November 19, 2017.

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..."

http://www.massadvocates.org/documents/DESEAACGuidelines.pdf

Programa de Habilitación del Lenguaje a través 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

http://ddas.vermont.gov/ddas-boards/boards-dds/boards-dds-vctf/

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. 

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