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

Tuesday, June 26, 2012

Textbooks and other books supporting the use of Facilitated Communication

Textbooks and other books supporting the use of Facilitated Communication and people who use it, by well respected and knowledgeable experts on AAC and on education of people with severe disabilities. 

Note:  This is not intended to be an exhaustive list, but merely a list with some good examples. 

Hank Bersani, Ph.D.  
Bersani, H.A., Jr. (Ed.).  (1999).  Responding to the challenge:  current trends and international issues in developmental disabilities:  essays in honor of Gunnar Dybwad.  Cambridge, MA:  Brookline Books.
Hank Bersani’s tribute to Gunnar Dybwad includes a chapter entitled “Not to Yield” by Robert Williams Parsons Cutler, Jr., a well known advocate and past President of AutCom, and well known adult with autism who communicates by typing using facilitated communication methods.  The book with chapter titles and authors is noted here: 

David R. Beukelman, Ph.D., and Pat Mirenda, Ph.D.
Beukelman, D. R. & Mirenda, P.  (2005).  Augmentative & Alternative Communciation:  Supporting children & adults with complex communication needs.  (3rd ed., pp. 323-326)
“Sharisa [Kochmeister] joins a small group of people around the world who began communicating through FC and are now able to type either independently or with minimal, hand-on-shoulder support.  There can be no doubt that, for them, FC “worked,” in that it opened the door to communication for the first time.  In addition, hundreds (or even thousands) of individuals use FC with physical support.  To many observers, it does not seem clear whether these individuals are authoring their own messages.  Thus, FC has become controversial and hotly contested as a valid and reliable technique (e.g., Calculator, 1999b; Duchan, 1999; Green & Shane, 1994).  We include FC here because of Sharisa Kochmeister (1997), Lucy Blackman (1999), Jamie Burke (Broderick & Kasa-Hendrickson, 2001), Sue Rubin (1998), and others who now communicate fluently and independently, thanks to FC.  For them, the controversy has ended.” 

Joanne M. Cafiero, Ph.D.
Cafiero, J. M.  (2005) Meaningful Exchanges for People with Autism: An Introduction to Augmentative and Alternative Communication.  Bethesda, MD: Woodbine House.
“There is a lack of scientific evidence in tightly controlled studies validating Facilitated Communication. This lack of quantitative evidence to support Facilitated Communication should not in any way discourage parents and practitioners from considering keyboards as communication options, nor should opportunities to provide literacy instruction be ignored. There are qualitative studies of individuals with ASD who participated in Facilitated Communication and are now independent typing communicators. Providing physical support in keyboarding must involve a systematic fading of those prompts and physical supports with the ultimate goal of encouraging functional, spontaneous, unprompted communication.”  (pages 79-80)

June Downing, Ph.D.  
Downing, J.  (2004).  Communication skills.  In F. Orelove, D. Sobsey & R. K. Silberman (Eds.), Educating children with multiple disabilities:  A collaborative approach (3rd ed., pp. 551-552).  Boston:  Paul H. Brookes. 
June Downing notes that “FC thus offers some individuals with severe and multiple disabilities an opportunity to express themselves and should be considered as a viable intervention option.”
Here is the entire section on Facilitated Communication in her chapter (11): 
 “Facilitated Communication (FC), a controversial approach to teaching and helping some students to communicate, combines physical and emotional support with the use of an AAC device (Biklen, 1973; Crossley, 1994).  Although this approach uses several strategies of direct instruction (e.g. prompts, reinforcement, fading), the controversy surrounding it focuses on the authorship of the created message (Green & Shane, 1994; Kaiser, 1994).  The major concern with the technique is that the person supporting the student (the facilitator) will consciously or unconsciously take a primary role in developing messages that are then said to come from the student.  Such influence is present in any use of ACDs when the person using the device requires substantial assistance to do so, however.  Obviously, with any intervention strategy, the critical goal is to fade support to allow the student maximum independent performance.  When FC is done correctly, the facilitator does not move the students hand to create the message but instead, follows the student's lead and only provides support as needed to allow the student access to the device (Crossley, 1994).  The facilitator steadies the individual's arm but does not direct it in the development of a message.

The ACD used in FC can be a simple letter board, a complex electronic device, a picture-based system, objects, or essentially any device that requires direct selection of the message.  When performed correctly, authorship of the message by the individual with severe disabilities can be ascertained (Biklen, Saha, Kliewer, 1995; Cardinal, Hanson and Wakeham, 1996).  FC thus offers some individuals with severe and multiple disabilities an opportunity to express themselves and should be considered as a viable intervention option.”

Official support for Facilitated Communication

Some Government Programs or Government-Funded Programs 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 Habilitaci├│n del Lenguaje a trav├ęs 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)

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 on Facilitated Communication - Qualitative studies, case studies

English language articles on Facilitated Communication (FC) and related issues, including qualitative studies (including speech, literacy, 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 showing evidence of authorship - in English

English Language Research Articles on Facilitated Communication – Studies focusing on authorship and showing evidence of authorship – in English

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.