We have received quite a bit of feedback from the article we recently published, “Join the Fight Against Attack on Nonverbal Autistics’ Right to Communicate,” about a controversial article recently published on Slate.com. In the article, which was riddled with inaccuracies and one-sided opinions, author David Auerbach denounces the efficacy of Facilitated Communication (FC) based, for the most-part, on old, outdated information and attacks without taking more current research into account, much of it based on the 1993 Frontline documentary, “Prisoners of Silence.”
But when it comes to scientific research and technological breakthroughs, 20+ years is a lifetime.
Technological Advances in One Field Positively Impact Many Others
To put this fact into perspective, just look at the evolution of PCs, and the difference between 1995 and 2015 technology.
- Memory (RAM): In 1995, most manufacturers adopted eight megabytes of RAM as standard, compared with four megabytes in 1994. Today, 2-8 gigabytes of memory is not uncommon.
- Hard Drives: In 1995, one-two gigabyte hard drives were about the largest hard drives available to the average consumer, and could cost up to $3,000 or more. Today, multiple-terabyte (1 tb=1,000 gb) hard drives are not uncommon. A 5 terabyte external hard drive can be purchased for less than $150.00.
- Modems: In 1995, the big news was the jump from 14.4k modems to 28.8k. A 2-hour movie with a file size of 2 GB would take more than 165 hours to download at 28.8. Today, depending on a number of factors such as your internet access speed and computer processing power, a 2-hour movie can be downloaded in less than 10 minutes.
How do these facts relate to medical research? For one thing, the increase in computer processing power and speed has allowed researchers to do more in less time helped to increase the rate of medical advances exponentially, For example, the 5-year relative survival rate for all cancers diagnosed during 2005-2011 was 69%, up from 49% during 1975-1977. Improvement in survival reflects both the increased ability for earlier diagnosis of certain cancers and improvements in treatment. As related to Autism Spectrum Disorders (ASD,) improvements in screening and testing are believed to be a contributing factor in the increase of autism diagnosis rates, up from 1 in 100 in 2000 to 1 in 45 in 2016, rather than an actual increase of incidence in the general population.
While it is true that the 1993 Frontline documentary uncovered some disturbing information about how FC worked and some of the people claiming to be trained facilitators, some of whom may or may not have mistreated their clients, it could not completely discredit the efficacy of the therapy. In fact, the documentary was the impetus needed for the field to clean up it’s act. Respectable institutions like the University of Syracuse and the University of New Hampshire established research departments and programs to train and certify FC trainers, including respected Master Trainers Marilyn Chadwick, Harvey Lavoy and Tracy Thresher.
It would be unrealistic to think that while the rest of the scientific community embraced new technology and it’s effect on the state of the various disciplines, that Facilitated Communication, also know as Supported Typing, would stagnate and not take advantage of new and developing tech. For one example, the introduction of the iPad, tablets, and teaching apps took FC out of the primitive world of letter and symbol boards, which, while effective have limited capabilities, and helped to improve typers’ communication skills considerably. Additionally, advances in voice synthesis technology has actually given many typers an opportunity to have a real voice. These advances have been life-changing for many FC users.
It has been encouraging that in recent months media outlets have begun to take another look at FC and adjust their positions on the subject.
Autism and the Media
…literature, studies, and views on FC largely discredit the technique. However, a small number of peer-reviewed articles did publish confirming evidence that validates some individuals’ use of FC. Some experts believe that FC can be effective in certain specific circumstances. A subject’s personality, disorder, motor skills, emotional commitment and work ethic are all critical factors influencing the possible effectiveness of FC. It is also heavily affected by the skills and training of the facilitator. Though Sue Rubin learned to type by having a facilitator support her hand and arm, she has now been typing independently for years.”
Over the last few years PBS, HBO, Netflix, and other media outlets had shown a number of documentaries and series related to autism, many of them with a less narrow-minded approach to the subject than earlier documentaries.
- Neurotypical: PBS premiered this rare film among documentaries about autism in July of 2013. It relates the experiences of this neurological condition from the point of view of autistics themselves. Via the worlds of 4-year-old Violet, teenager Nicholas and middle-aged wife and mother Paula, along with provocative interviews with other autistics, the film recounts the challenges they face living among “normal” people–whom many of them call “neurotypicals.” READ MORE
According to author Ariel Relaford on Autism Daily, “The documentary raises the important central questions of what is “neurotypical” for the human mind, and should the vast and varied aspects of autism be looked upon as signs of dysfunction or insights into a broader understanding of what it is to be human? As a result of the film’s explorations of these questions and of the validity of human perception, Neurotypical is one of the only documentaries of its kind.”
- The documentary “How to Dance in Ohio” had its world premiere at the Sundance Film Festival in January of 2015, and debuted on HBO later that year.The 88-minute film tracks a group of teens and young adults with autism in Columbus, Ohio as they spend 12 weeks working on their social skills with a psychologist ahead of a spring formal.
According to Alexandra Shiva, the film’s director, “This is a film not only for the many whose lives are touched in some way by autism, but also for anyone who can relate to the fraught experience of growing up and trying to understand adulthood.”
- Sounding The Alarm – a profound documentary that examines the lives of 12 families affected by autism, and chronicles the challenges and opportunities they face from diagnosis to adulthood.
- Fly Away – a powerful film directed by Emmy Award® winner Janet Grillo (“Autism: The Musical”.) FLY AWAY narrates the story of Jeanne and her autistic teenage daughter, Mandy. As the pressures of work and her child’s needs increase, she must decide whether or not to enroll Mandy in a therapeutic residential facility.
- Dad’s in Heaven with Nixon – a documentary filmmaker chronicles his mother’s passionate mission to help his brother who has brain damage and autism, while delving into his family’s history of both mental illness and creative brilliance.
- A Mother’s Courage: Talking Back to Autism – tells the story of a mother who has done everything in her power to help her son. She has the quenchless thirst for knowledge about the mysterious and complex condition that autism undeniably is. Along they way, Margret meets other families and hears their unique stories about how they too have been touched by autism.
- The Story of Luke – a film about a 25-year-old man with autism who lives a sheltered life with his grandparents. When his grandmother dies, he is forced to live with his dysfunctional relatives who have no patience for him or his senile grandfather, who they quickly force into a nursing home. Luke is left with his grandfather’s final semi-coherent words: “Get a job. Find a girl. Live your own life. Be a man!” For the first time in his life, Luke has a mission. He is about to embark on a quest.
- Most recently, the PBS series Independent Lens aired “Autism in Love,” a documentary focusing on how people with autism experience love and manage romantic relationships in January. The film, which debuted in 2015 at the Tribeca Film Festival, follows four people on the spectrum as they seek out and maintain relationships.
Filmed in a highly personal style, Matt Fuller’s “Autism in Love” offers a warm and stereotype-shattering look at four people as they pursue and manage romantic relationships.
Facilitated Communication’s Future Should be Judged on Present Success Stories, not Past Mistakes
The bottom-line of all this is that in the face of studies that have validated the authorship of FC users’ writings, and given the growing number of former FC users who now type independently, including Sue Rubin, Tracy Thresher, and Jamie Burke, it is becoming more difficult for the nay-saying pundits to hold their unequivocal positions without seeming cruel and vindictive.
It seems to us that the continued anti-FC sentiments like those in Mr. Auerbach’s article function as hate speech when it calls into question, without substantiation, the intellectual competence of FC users, thereby undermining their opportunity to exercise their right to freedom of expression. This is why we stand behind our position that now is the time to do something about it, to stand up, be counted, and fight back for the equal rights nonverbal typers are entitled to. If you agree, please read our article, “Join the Fight Against Attack on Nonverbal Autistics’ Right to Communicate,” and show your support for this effort.