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. 

Monday, January 9, 2012

Massachusetts Guidelines for the Preparation of Teachers of [Students with] Moderate and Severe disabilities, December 2011

Congratulations to Massachusetts for its new Guidelines for the Preparation of Teachers of [Students with] Moderate and Severe Disabilities: Instruction on the appropriate use of augmentative and alternative communication and other assistive technologies, December 2011.  Supporting effective communication is a critically important step in supporting self-determination.  

Notable among the guidelines is the inclusion of information on Facilitated Communication Training (Section II Program and Course Design, 2d).  Although I have heard two AAC supporters question the inclusion of Facilitated Communication training, due to its having been considered a controversial AAC method, I am glad to see it included in the training guidelines, and I consider its inclusion highly justified.  For anyone who has questions about this, I will provide some information and updates to clarify the issue.  I will also provide some links for additional reading.  This is a complex issue which is sometimes misunderstood and misrepresented.  The best approach to it is to understand the complexity. 

Support from National Advocacy Organizations

Two national advocacy organizations have had position statements that support Facilitated Communication Training for several years:  TASH, Autism National Committee (AutCom).  Although it has not issued a statement in support of FC training, the AAIDD (American Association on Intellectual and Developmental Disability) has removed from its website an old position statement recommending caution in its use.  In light of the demonstrated progress that has been made by many people who use FC to communicate, other organizations are considering writing supportive statements in the coming year. 

In 2011, a landmark documentary film about two men with autism who communicate by typing was released to critical acclaim:  Wretches and Jabberers.  In the film, two men with autism travel around the world in their quest to change the world’s perspective on disability and people who have limited speech.  Both men learned to communicate with fluent natural language through typing with support, using methods of facilitated communication training.  The film was selected by the Autism Society as its featured film for Autism Awareness Month and was screened in many locations around the US during April 2011 and after.  The two stars and their facilitators delivered the keynote at the Autism Society’s national conference in 2011 and have made numerous keynote presentations, including one at the Arc of Virginia 2011 Annual Conference in Virginia Beach.  Both the Autism Society and the Arc have been highly supportive of the film, its stars, and its message. The Autism Society lists Facilitated Communication as a Treatment Option in its brochure Next Steps: A Guide for Families New to Autism. 

Controversy and Discussion

Although the research results have been varied relating to FC, the review and opinion articles which claim that FC has been disproven or “debunked” actually overstate the research results.  They fail to acknowledge or take into account the research studies in which people have been able to communicate their own messages when their facilitators did not know the content of what they wished to communicate. Interestingly, the studies have not all asked the same research question. Some have sought to know whether influence can happen, and other studies have sought to find out if people can communicate their own thoughts and under what conditions. Studies have found that influence can happen, and studies have also shown that people using FC have been able to communicate their own messages unknown to the facilitator.  Bob Rubin addresses the research quite well in his presentation linked below on the ICI website.
The FC Controversy: What is it? Why is there a controversy? by Bob Rubin, Ph.D. http://soe.syr.edu/media/documents/2010/7/Why_the_FC_Controversy.pdf

The information at the following link includes basics about the method of facilitated communication training and about research, with references for research studies on all sides of the issue: 

A related article on supported typing and authorship at the following link provides additional helpful information: 

Best Practices in Facilitated Communication Training

Although there has been controversy about the method of facilitated communication training, it is important to take a closer look to understand what is FC and what is not FC.  In some cases reported in the media and research literature, what has been called FC has been far from the best practice standards which have been developed for FC training. Here is a link to a document listing the elements of Best Practices in Facilitated Communication Training:   http://soe.syr.edu/media/documents/2010/6/FUNDAMENTAL_PRINCIPLES_AND_BEST_PRACTICES.pdf  Including in teacher training some information about these principles and best practices should be of value, because teachers need to know about the method, to recognize good technique, and to understand the many environmental and interactional variables that can be supportive or detrimental to communication success.  They need to know that the goal is independent communication and that this may be a slow and long-term process which may be achieved first through independent yes/no or multiple choice responses before independent open communication is achieved.  They also need to know that while working on more complex communication, one also seeks to help the person develop some type of reliable independent communication, such as independently indicating YES or NO or selecting a response from an array of choices.  In addition, they need to understand about communication partner skills, movement difficulties and sensory issues, which can have a significant effect on communication.   

Increasing Reports of Success

There is an increasing number of people who have used this training successfully beginning in the early 1990s to gain verifiable, reliable independent communication.  Many have made notable personal progress in gaining better control of their behaviors and conversational abilities. They have benefited from exposure to print-rich environments and from literacy instruction, which is often not provided to all students who use or need access to AAC, as we know from the many battles of which we hear between parents and schools. A significant number have graduated from high school and college and pursued advanced degrees.  For them, the controversy is over, as Beukelman and Mirenda noted in their AAC textbook. 

Last Resort Method

The method of facilitated communication training is not a perfect method and is typically a method of last resort to get to more effective, fluent communication.  Sometimes it is used in an effort to get any reliable communication, after other methods such as modeling and the use of PECS and sign language and other methods have been tried for years unsuccessfully. FC training can certainly be done poorly, as can any method. In many of the early studies, the training and experience of the facilitators was very limited and was insufficient to teach them strategies for minimizing the likelihood of influence and for teaching the typers to indicate in some way that they were being influenced and not communicating their own messages. Many professionals are waiting for more large-scale quantitative clinical trial research studies with control groups to be conducted so that they might be able to predict what percentage of people will benefit before they will recommend it. Meanwhile, the number of children and adults who are having verifiable success is growing, as their families learn the method and document the specific support that is helpful to their family member and their evidence of independent communication. 

FC training is not for everyone, but it has been a method that has helped some people.  As with any AAC method, success takes a dedicated team that presumes competence and intellect, works together and learns together how to support the individual using the best techniques, works toward literacy and independent thought and effective fluent communication, tries a variety of methods, and never gives up on the person. 

My Perspective

I am a facilitated communication trainer (having completed the introductory FC training and the training of trainers seminar) with an M.Ed. in special education with a specialization in severe and profound disabilities.  I learned the method in the early 1990s and have seen it work with many people but not with everyone with whom it has been tried.  I have followed the research, controversy, successes and failures, progress and setbacks.  People with whom I have seen FCT work have typically been exposed to print-rich environments and have had the opportunity to gain literacy skills.  I have not witnessed spontaneous immediate poetry-writing, perfect spelling, or immediate fluent communication.  The months and years of hard work that may precede the communication of fluent natural language are seldom documented in news reports.  The adults with whom I have worked have typically taken weeks or months to show signs that the method might be one that could potentially be helpful to them—and they have had limited previous success or no success with every other method tried, such as signing, PECS (Picture Exchange Communication System), communication boards, and so forth.  They may have been presumed to have limited understanding and may have had labels of significant intellectual disability, based on their poor performance on tests of intelligence which relied on their impulsive movement, limited pointing skills and impaired motor planning. 

As we know, without reliable pointing or another way to demonstrate understanding, people sometimes assume the individual has limited cognitive ability and limited learning potential.  I see Massachusetts’ move to train teachers about AAC in all its forms and to teach them about how to support people who use AAC as a huge step forward.  Many people with speech impairments still wait in silence for effective communication.  Their progress in improving their communication will depend on the communication supports provided by parents, friends, and professionals in schools and other services.  Giving teachers the skills they need to support students who use AAC or who need access to AAC is a great start.  

Congratulations to Massachusetts and to the students who will benefit from having teachers who know more about augmentative and alternative communication and other assistive technologies!