NLMFF interviewed Douglas Biklen, Ph.D., Dean of the School of Education at Syracuse University and Director of the Facilitated Communication Institute, about his efforts to advance the fields of inclusive education and facilitated communication, about the work of the Facilitated Communication Institute, and about his new book, Autism and the Myth of the Person Alone.
NLMFF: Could you tell us a bit about your academic and professional background and the circumstances which led to your interest in autism spectrum disorders?
Dr. Biklen: My work in autism began in the 1970s when colleagues and I at the Center on Human Policy, a research and advocacy institute at Syracuse University, were conducting research on conditions in closed institutions -these were referred to as "state schools for the mentally retarded"- and on the problems of exclusion of children with disabilities from public education. A substantial segment of the children we observed were children classified as autistic and/or multiply handicapped. In those days, autism was more narrowly defined than it is today, and so some of the students who would now be considered to be on the autism spectrum were not so labeled. My own training was in public policy and planning, but over time my research interests and my use of ethnographic research methods (i.e., participant observation, interviewing, symbolic interaction) brought me more and more into the worlds of educational and clinical practice. During this period I worked with several leading researchers, including Dr. Mary Goodwin, a pediatrician who was conducting research on autism and who assisted me in advocating for children with autism to gain access to public education. Other colleagues at the time included Dr. Burton Blatt, a leader in the desinstitutionalization movement, and Dr. Peter Knoblock, the first educator in America to focus attention on the possibility of creating inclusive education settings for children with the autism classification along with non-disabled students.
NLMFF: You have long been considered a pioneer in seeking inclusive education for persons with disabilities. Could you describe your early work on inclusion and how it led to your interest in literacy?
Some of our first efforts at inclusion were in team-taught classes, with both a head special education teacher and an elementary education teacher, and a group of 10-12 students, including several with the autism classification and the rest non-disabled. These classrooms were developed collaboratively by the Syracuse City School District and by my colleagues at Syracuse University , Peter Knoblock and Steve Apter. Initially, such classes were seen as effective sites for social inclusion, but progressively we began to ask ourselves how students with autism might have fuller access to the academic curricula. It was not long before we began to see that difficulties with communication dramatically hindered the students with autism from academic success. Typically, we were left wondering what the children with autism were thinking, how they perceived the environment, and what they wanted and felt. As one parent told me, communicating with her son was a lot like playing the game "twenty questions," but without necessarily having an answer available at the end. My book, Schooling Without Labels, (Temple University Press, 1992) describes this work and our own thinking at that time.
NLMFF: How did you first learn about facilitated communication, and what motivated you to create the Facilitated Communication Institute at Syracuse University ?
Dr. Biklen: I learned about facilitated communication through the book Annie's Coming Out (Crossley and McDonald, 1980) and then subsequently through correspondence with the authors. Crossley initially described her use of facilitation with people with cerebral palsy, but then began using the method with an individual with autism in late 1986. When I heard of this work, I must admit I was confused by the claim that people with autism who were essentially non-speaking might be able to type out dialogical sentences. But I was intrigued enough to want to learn more, and so on a speaking trip to Australia , I arranged to meet with Crossley and several of her students. I subsequently wrote about her work after conducting a World Rehabilitation Funded study trip to her Deal Communication Centre. The first of my articles on the topic was published in the August 1990 issue of the Harvard Educational Review, and was entitled "Communication Unbound: Autism and Praxis." During the research for that article I learned that others had previously discovered this method of communication and had used it with individuals with autism, most noticeably a parent-educator named Rosalind Oppenheim-her book on the topic, entitled Teaching Autistic Children , had been published in 1974-, and also Arthur Schawlow, a Nobel prize winner (1980 for research on laser technology) and parent of an autistic son. Schawlow and his wife Aurelia had written a book chapter about their use of the method in a 1989 collection of essays on developmental disabilities.
NLMFF: What type of research is currently being conducted at the Facilitated Communication Institute and what types of services does the Institute offer?
Dr. Biklen: Current research projects include: a doctoral study on how students with autism sometimes utilize printed matter and reading to then progress toward spoken language-this study includes facilitated communication (fc) users as well as non-fc users; a doctoral study on friendships between students with and without disabilities, including several students who are fc users; a study on "agency," which looks at how fc users who are interested in achieving independent communication interpret the idea of independence; a doctoral study of legal discourses on disability and disability issues, including facilitated communication; a doctoral study on professional conceptualizations of autism; and a study of individuals who learned to communicate through facilitation and then achieved the ability to type without physical support.
In addition, the Institute has played a leading role in creating documentary films featuring individuals who learned to communicate with facilitation, including most recently the film, My Classic Life as an Artist: A Portrait of Larry Bissonnette.
The Institute regularly provides training workshops and individual consultations on the method and also operates an informational website (FC Institute).
NLMFF: In general, what type of research might lead to greater understanding and acceptance of facilitated communication?
Dr. Biklen: As I see it, there are several important research agendas related to gaining better understanding and acceptance of the method. First of course are studies that address the question of authorship. Everyone who has done research on this method realizes that the principal limitation of the method is the problem of ensuring that the fc user is the originator of the typed communication. It is essential to ensure that any influence or over-interpretation by the facilitator is avoided. Ideally, the field will embrace non-intrusive means of studying this question, for example with eye scanning technology, with statistical analyses of text and similar methods. It will also be interesting to see how brain imaging may prove to be useful in understanding the method. And of course, research on how individuals can achieve physically independent typing, and/or the ability to speak before and while typing, has done much to mute criticism of the method.
Many of us who have conducted research on the method have been quick to point out that this method, given the complication that it can be easy to influence a person's typing, is not without its limitations. Yet until there is a simpler, better way to enable non-speaking individuals to convey their thoughts, it is incumbent on us to address the limitations in as rational way as possible and to continue to research ways to ensure that people with autism and other developmental disabilities have reliable means of communicating.
NLMFF: Over the years, the issue of authorship in facilitated communication has been a hotly debated topic. What evidence has led you to support and promote facilitated communication as a valid communication method?
Dr. Biklen: I am impressed with the achievements of those individuals who first learned to communicate with facilitation and who have since developed the ability to type without physical support. Equally, I am impressed that some individuals can now speak the words they are about to type.
Other research approaches that I find particularly compelling and persuasive include those that demonstrate, through use of eye tracking, how the fc user may track out the spelling of a word before ever making a move; those that measure speed of typing, indicating how a particular fc user types given words at a particular speed, with different facilitators, and at significantly different speeds than other fc users who may work with the same facilitators; and those based on detailed statistical analyses of typing done by fc users, where the research demonstrates length of utterances, average length of words, and where findings on these are significantly different one fc user from another. I have also been impressed that many fc users have highly distinctive styles of expression and also that many fc users are able to accomplish some of their pointing without any physical support even if they need some support for much of their typing.
NLMFF: What do the critics of facilitated communication argue, and do you feel that these are valid arguments?
Dr. Biklen: The most useful critical argument about facilitation is that the method can lead to fc users being influenced, even to the point of typing content that is not of their own intention. I pointed out concern about this in my first article on the method. It is this criticism that has led to strong interest among all researchers on the method to come up with effective ways of evaluating authorship. This criticism has also provided impetus for individual fc users and facilitators to work on strategies of fostering physically independent pointing and also speaking in conjunction with typing or pointing.
NLMFF: For individuals new to the field who would like to review the research literature on validation of authorship in facilitated communication, could you suggest key publications on both sides of the controversy that they should look into?
Dr. Biklen: Don Cardinal and I reviewed much of the research prior to 1997 in our book Contested Words, Contested Science (Biklen & Cardinal, 1997). People interested in key studies might want to look at the following:
Bebko, J., Perry, A., & Bryson, S. (1996). Multiple method validation study of facilitated communication: ii. individual differences and subgroup results. Journal of Autism and Developmental Disabilities, 26, 19-42.
Broderick, A. A. & Kasa-Hendrickson, C. (2001). "Say just one word at first": the emergence of reliable speech in a student labeled with autism. Journal of the Association for Persons with Severe Handicaps, 26 , 13-24.
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. (2001). Can't or won't? Evidence relating to authorship in facilitated communication. International Journal of Language & Communication Disorders, 36 (Supp), 98-103.
Niemi, J. & Karna-Lin, E. (2002). Grammar and lexicon in facilitated communication: A linguistic authorship analysis of a Finnish case. Mental Retardation, 40 , 347-357.
Rubin, S., Biklen, D., Kasa-Hendrickson, C., Kluth, P., Cardinal, D., & Broderick, A. (2001). Independence , participation, and the meaning of intellectual ability. Disability & Society, 16 , 415-429.
Tuzzi, A., Cemin, M. Castagna, M. (2004) "Moved deeply I am" Autistic language in texts produced with FC. Journees internationals d'Analyse statistique des Donnees Textuelleds, 7, 1-9.
Wheeler, D., Jacobson, J., Paglieri, R., & Schwartz, A. (1993) . An experimental assessment of facilitated communication. Mental Retardation, 31, 49-60.
Other useful resources on the topic are:
Duchan, J., Calculator, S., Sonnenmeier, R., Diehl, S. & Cumley, G. (2001) A framework for managing controversial practices. Language Speech and Hearing Services in Schools, 32, 133-141.
Terrill, C. (Producer/Director). (2000). Inside story: Tito's story . [Film Documentary]. England : BBC.
Wurzburg , G. (Producer/Director) (2004). Autism is a world . (Film Documentary). Atlanta : CNN. http://www.stateart.com/productions/disabilities/autismisaworld/
iklen, D. & Rossetti, Z. (Producers/Directors) (2005) My Classic Life as an Artist: A Portrait of Larry Bissonnette (Film Documentary). Syracuse , NY : Center on Human Policy, Law and Disability Studies. http://myclassiclifefilm.com/
NLMFF: What would you say to families affected by autism that might be interested in trying facilitated communication but are hesitant due to the controversy surrounding the technique?
Dr. Biklen: This method, like any method in the field of autism, is not a cure for autism and is not a cure-all/panacea for communication difficulties associated with autism. Like any method, it can be done poorly or well. Therefore it should be approached rationally, and with care. I recommend that anyone interested in the method read Crossley's classic book Facilitated Communication Training (Crossley, 1994) and also read our training standards on our website.
NLMFF: You recently published a book entitled "Autism and the Myth of the Person Alone. " How did you first come up with the idea for this book, and what did you hope to accomplish through writing this book?
Dr. Biklen: This book was several years in the making. For years I had wanted to write a book that accurately reflects the perspectives of individuals with the autism classification who have difficulties with speech or who seem not to speak at all. This is that book. It is a collection of accounts written by people with autism who first learned to communicate with facilitation and who (with one exception) later learned to type without physical support or who developed the ability to speak before and as they type. The one person who does not yet type without any support is able to paint independently, and his contribution to the book is a series of plates of his acrylic works through which he narrates his years spent in closed institutions and his understanding of autism.
The book includes individuals who live in different countries, including Italy , the U.S. , Australia, the U.K. and India. Given that autism is a spectrum disorder, it is not surprising the authors provide quite a range of perspectives on it. My hope is that the lessons that can be learned from their varied and richly descriptive accounts will be of considerable use to families, teachers, and even researchers.
NLMFF: What type of reaction to your book have you received from the autism community?
Dr. Biklen: I have had a number of requests to speak from the book and to speak alongside several chapter authors at autism conferences in the U.S. and internationally. Last year I gave invited addresses in Finland and Germany , as well as at several universities in the U.S. In the coming year, I have addresses scheduled in Italy , China, and again in Finland.
Reviews of the book are in the pipeline, and most are extremely laudatory. Reviewers seem genuinely interested in and impressed with the accounts by people with autism. One of my all-time heroes in the field, Donna Williams, author of the best-selling autobiographical books Nobody Nowhere and Somebody Somewhere, as well as seven other books on autism, has written the following about my book Autism and the Myth of the Person Alone:
"There are many authors on the autistic spectrum who profess to know how non-verbal people think, feel or experience, and it's easy to imagine that people with a shared label can all speak for each other. Fact is, however, non-verbal people have always borne the brunt of fanciful, patronizing and condemning projections alike. From claims they are all fairy spirits, to claims they all think in pictures, to claims they are all trapped geniuses or that they are all mentally retarded, non-verbal people have lived on the side-lines listening to, sometimes reading this stuff, waiting to have their own say, to have that say respected and published."
"Born in the diagnostic ignorance of the 1960s, as a person with dysfunctional language till my teenage years, I was still being thought deaf till I was nine and when that was ruled out, the verdict was that I was disturbed, until I was finally diagnosed with autism in my 20s. I don't profess to know how any other functionally non-verbal person thinks, feels or experiences, but I can certainly identify strongly with what it is to be unable to assert my sanity and intelligence well into late childhood with doubts still persisting into my teens, and I applaud the commitment, the humility, the humanity of Doug Biklen (and those of his ilk) for all he has done for the world of functionally non-verbal people, not only championing their rights, but also for providing them opportunities to be heard in their own voices through typed communication, fighting for the equality and validity of typed communication and taking the patient effort to let this wonderful diversity of functionally non-verbal authors unravel and tell their own stories in their own words so wonderfully in this book.
"These authors demonstrate a diversity of means through which they came to typed communication, a range of relationships to thought and styles of thought and they do so with wit, with anger, with sadness and often forgiveness of an ignorant world that I'm not convinced always deserves that forgiveness. They are the new pioneers in this field, not only people typing, but people who have established themselves creatively as authors and artists in their own right."
I can't recommend this book highly enough. I'd have given it six stars if I could."
NLMFF: Who have been the most influential people in your journey towards understanding facilitated communication?
Dr. Biklen: Well. Of course I found Rosemary Crossley's groundbreaking work essential. At the same time, Ralph Maurer's early study on motor disturbance and autism was hugely important, as was the classic book by Oppenheim that I mentioned earlier ( Teaching Autistic Children ). But perhaps most influential have been people with the autism classification themselves. Here of course I include especially Sue Rubin, writer of the Academy Award nominated documentary Autism Is A World. The other authors of chapters in my recent book all taught me a great deal. And I owe much to the early work of Lucy Harrison, who appeared on the television news show PrimeTime Live with Diane Sawyer. Lucy has since developed the ability to speak before and as she types and has earned a bachelor's degree. Another important person in the field is Jamie Burke, an fc user who wrote the documentary we produced entitled Inside the Edge.
There are so many people who have contributed to our understanding of facilitated communication that it is impossible to mention them all here. But certainly they include Marilyn Chadwick, Anne Donnellan, Ben Lehr, Jane Remington Gurney, Mayer Shevin, Eugene Marcus, Larry Bissonnette, Pascal Cheng, Harvey LaVoy, Don Cardinal, Darlene Hanson, and many, many others.
NLMFF: What advice do you have for beginning facilitated communication users and facilitators?
Dr. Biklen: Read Crossley's book Facilitated Communication Training read other works by fc users, pay attention to the goal of independent typing and also speaking while typing, try different methods of demonstrating authorship, and practice, practice, practice.
NLMFF: What are your goals and visions for the future of Facilitated communication, and what action is necessary for us to reach these goals?
Dr. Biklen: The goals, visions and strategies are numerous:
- See facilitated communication become a standard form of augmentative and alternative communication. To accomplish this, there must be more research on the method, more attention to quality training and to the goals of independent pointing and to a combination of speaking and typing, and more advances in confirming authorship.
- Multiple means of demonstrating authorship and introduction of authorship strategies into school and other training curricula. As more research studies reveal strategies for confirming authorship, predictably these will yield improvements in clinical practice.
- Recognition that impaired communication is not synonymous with evidence of intellectual impairment. It is crucial that the field of developmental disabilities decouple communication difficulties from assessments of intelligence. Advances in this direction are likely to happen as greater research attention focuses on developmental dyspraxia and movement disorder in the field of autism.
- Greater opportunities for people on the autism spectrum, including fc users, to describe how they experience autism. This is already occurring, as fc users who have achieved physically independent typing are being invited to give addresses at national and international conferences and to appear in and also write the narratives for film documentaries.
- Greater participation by people on the autism spectrum in designing research studies or in commenting on research designs of studies related to communication and autism.
- Expansion of research on how best to incorporate advances in communication, including facilitated communication, into the broader agenda of improving participation by people with autism in all aspects of societal life. This will occur most likely as people with autism become active in disability advocacy organizations.
- Initiation of brain imaging studies that involve people who are fc users. This work may depend upon the availability of "open" imaging technology.
NLMFF: Thank you so much, Dr. Biklen for your insights and for your efforts to advance the fields of facilitated communication and inclusive education.