Anuja Thapar, BS and Darlene Hanson, MA, CCC
One of the most instrumental interventions in helping our son with autism has been the inclusion of Facilitated Communication: A form of Alternative and Assistive Communication (AAC). Facilitated Communication, or supported typing, assists people with communication impairments or movement disorders by providing them with the supportive means and skills to express themselves.
How does Facilitated Communication work?
Facilitated communication can work for many people who struggle with communication and speech difficulties. These people express themselves by pointing to pictures, letters, icons, and typing. There is a communication partner that provides not only physical, but also communicative and emotional support, and encouragement.
At the core of FC is the belief that an individual can communicate efficiently despite their physical and development limitations. It works by providing tactile feedback to a disorganized neurological system by supporting the body to focus and initiate meaningful communication, while inhibiting impulsive movements. The communication partner provides physical support to ensure focus on the keyboard or display, and stabilization of the person’s body. Trained communication partners also support the individual to develop their expressive language skills and learn to participate in academic and/or social communication.
Through practice and opportunities to think and process new information, individuals with special needs can often show that they can communicate their ideas. The goals include independent pointing, typing, speech, and helping the person achieve their highest communication potential.
The research on Facilitated Communication
Dr. Rosemary Crossely of Australia started talking about supporting communication, as Facilitated Communication Training, in 1977. In 1979 Anne MacDonald won her Supreme Court case documenting that she was in fact able to communicate when facilitated to use a letter board. In 1993, Dr. Doug Biklen of Syracuse University introduced us in the United States to the strategy in his book Communication Unbound.
Over the past two plus years, there has been some investigation of one’s ability to author communication through support in the research. Some of the single subject studies indicate that the support person can influence facilitated communication. In the 1996 study Investigation of Authorship in Facilitated Communication (Cardinal, Hanson, and Wakeham) it was demonstrated that some individuals were able to pass a message when provided with support, and most importantly that this process is complicated. Doug Biklen and Don Cardinal go on to describe the ins and outs of the research on Facilitated Communication in the book Contested Words Contested Science, (1997).
What we see now is that influence is possible; however so is one’s ability to document authorship when provided with support. Of even greater interest is that individuals are learning to communicate without physical touch through the use of the strategy of Facilitated Communication.
Over the years there has been additional information on authorship, but more importantly there has been the addition of research on the neurologic systems of individuals with autism. This information is beginning to describe the motor differences for these individuals. Dr. Anne Donnellan has been leading the conversation on motor differences for individuals with autism who do not have speech. She has partnered with Martha Leary to write many articles and books on the subject with their most recent book Autism: Sensory Movement Differences and Diversity, (2012) shedding new light on how we as service providers and families can incorporate new information into the story on how and why individuals have such difficulty with communication.
How he got started with Facilitated Communication
After our son was diagnosed on the autism spectrum, at the age of 3, we heard only about the dismal road that lay ahead of us. Feeling emotions of anger, sadness, and defeat, we had little hope for our son’s future. In a state of shock and disbelief, I could not believe that a child could regress into an infant almost overnight. The once typical toddler had been taken into an unreachable world. I searched on the Internet for answers and found mostly dim and dire stories for the future of a child with autism who had regressed. Searching endlessly to find the appropriate interventions, I came across several therapies with the hopes of a breakthrough that would jump-start our son’s development, as well as mend the relationships that had been broken forever, or so I thought!
Miraculously I stumbled upon an interesting article with a positive view of autism and learned about a form of augmentative communication called facilitated communication. After reading about the technique on the Internet, I started experimenting by providing physical support to our son. Slowly I began to realize that our son was very much locked inside his body without the tools to communicate. It would be almost four and half years later that we would meet an expert in Facilitated Communication, Darlene Hanson, who could verify our hopes and help to mend those once severed relationships. We now could see some light and inspiration to build our son’s future.
Through the years with Darlene’s expertise, along with much hard work and persistence, we began to focus on slowly fading the physical support and working towards independence. Today, even though he requires some support, he continues to work towards independence.
Providing us a better understanding of our son’s strengths and challenges
Facilitated Communication has provided the basis for understanding the challenges and needs of our son, as well as providing an endless avenue to build the typical relationships (i.e., father/son, mother/son etc.) that would otherwise have not have been possible. The most significant contribution that facilitated communication has provided us is a better understanding of our son’s strengths and challenges. We always believed, despite his communication impairment, that he desired to be social and could be like any other typical child.
Facilitated Communication has given him the tool to communicate first-hand his challenges, such as, why speech is so difficult for him, what are his sensory issues, why they happen, and why he needs to engage in self stimulation. In fact, it has made us more aware of his strengths we now know that he is a bright, social person who has emotions and feelings like you and me. Facilitated communication has taught us more about his world so we can better address the challenges he faces by learning which interventions are positively impacting his functional abilities.
How it has helped him communicate
Today our son can communicate by making others understand him better and his actions. It has helped him teach others to think “out of the box” in viewing him and other people for their ability rather than their disability. Most importantly it has demonstrated that, cognitively and emotionally, he is no different from his peers. It has provided him with the skills needed to be included in a typical school setting where he is able to communicate and demonstrate his knowledge.
Today he continues to make others understand about autism and that it is not at all about wanting to act differently, but rather about the many physical challenges and different sensations of experiencing the world. Since he can communicate, he is no longer frustrated but can now behave more like his peers, learn social cues, and most importantly develop more awareness about the world. In fact, it is through this awareness that he has communicated to us the many challenges he faces with the world. We are able to help him better by finding the right interventions to overcome his challenges and develop skills that have taken him to the road to recovery. Most importantly, through Facilitated Communication, Rishab has learned to communicate more independently and continues to work towards physical independence.
Hopes and dreams for the future
Today, because of Facilitated Communication, we are able to have the same dreams as other parents’ have for their children. While some dreams are still not fulfilled, many, such as, him being able to swim, ride a bike, attending mainstream school and being included with his peers have already become reality. Facilitated Communication has given us greater hope for attaining future dreams for our son which include going to college, getting a job, getting married, and having a family of his own.
Our road to recovery is not yet complete, but Facilitated Communication has given us greater hope for our son’s future. I look forward and will cherish the future aspirations of our son having a best friend, attending college, and mostly the day he fulfills his dream to be the scientist to help and cure autism. I can now see a brighter future for our son that will be more successful and enjoyable because he has found his voice through his “talking” finger!
Anuja Thapar is a graduate from University of Maryland, College Park with a double Bachelors of Science degree in Mathematics and Electrical Engineering. She has lived with her family in the Bay Area for over 17 years. Currently, she is a full time mom hoping to make her son’s life autism free.
Darlene is a speech and language specialist with an expertise in working with individuals with severe communication impairments. She is the Director of Communication Services with WAPADH, in the Los Angeles area. Darlene has been working in this field for 22 years. Her work focuses on bringing alternate modes of communication to those who do not use speech to communicate effectively.
Darlene has participated in the writing of the Standards of Best Practice for Facilitated Communication from Syracuse University, and has co-authored research on authorship for Facilitated Communication. To find out more about her work, please visit www.darlenehanson.com.