I am a parent of an 18 year old non-verbal girl with Autism. My daughter endured over 8 years of “scientifically validated” Verbal Behavior ABA therapy prior to starting with the Rapid Prompting Method (RPM). We pursued this line of intervention for 5 years with some success prior to delving into Facilitated Communication (FC) which has given us full open communication and academic success and a wide wide world of understanding and exchanges with my daughter. My daughter was also the lucky recipient of 8 years of Occupational Therapy by outside and school therapists and a lifetime of home programs provided by yours truly mom who is a graduate of the Medical University of South Carolina Occupational Therapy Program. All of these interventions have moved us forward, but FC has given us life changing strides.
I am writing in response to the article published by Age of Autism on 10/15/18 titled The Facilitator’s Touch. Mr. Dalziel writes a number of things that are troubling and slanted. The first red flag of the article is that Mr. Dalziel describes his first experience with FC as the “trained graduate student” stating “Tell me about this book”. It only takes 1 basic training in FC to know that you do not start with open communication such as this, right out of the gate. Mr. Dalziel then goes on to state “he did not want to do it”. Hmmm, ok, problem number 2 identified…She then showed him a picture book and asked him to describe it. Again, a bit of an open topic for a newbie typer. There is a process of teaching FC and the following of Best Practice methods that should be held when learning this method. There are other factors such as the intangibles that some would call trust or rapport. Ask ANY parent out there if they have ever had the experience of their child (any child with or without a disability) not wanting to participate in something with a stranger. Now imagine that stranger touching that person and holding their arm and then demanding a response. I know this scenario very well because working as a Pediatric Occupational Therapist I would never grab a child and demand an outcome. You have to build rapport and trust first. I often would demonstrate my techniques on the parent first and then have them practice the home program with me allowing the child to observe these interactions. If I was lucky at the next visit the child would willingly accompany me to the clinic for treatment and participate more fully.
Is FC a perfect method? I would say “no”. There is a chance that if you have an over zealous facilitator with bad intentions that influence could happen. However, I must ask how anyone can deny the success that some FC users have had as they progressed over time from requiring assistance to reaching 100% independent typing. I have personally witnessed this in my own community over a period of one year.
Is ABA a perfect method? I would say “no”. There are some important things and meaning that can come from ABA but there is also a very good chance that your child will become completely prompt dependent and walk away with a broken soul and zero self-esteem. Does ABA put hands on the child and “teach” them? Absolutely, it’s called “errorless teaching” and is used at the beginning of a learning task to “ensure a correct answer” and then faded off over time to gain independence. FC NEVER “ensures a correct answer” and never pushes a child in the direction of the keyboard. FC ONLY pulls away from the keyboard, monitors the child’s eyes and uses self-correction techniques (like use of the delete button at the initiation of the typer only) to fix mistakes.
You may wonder how FC compares to the Rapid Prompting Method. Well, first I would like to say that Soma Mukhopadhyay is my hero. She taught me the value of presumed competence. What does that mean? Believing in this small human next to me. Believing that this person who is struck with an unruly sensory system can work past this mess of various manifestations to be purposeful. Believing in intelligence and knowing that the twinkle that I saw in my daughter’s eyes was more than a desire to pace, run, flap, scream and spin. It was her way of dealing with a body that would not cooperate. Rapid Prompting does not use physical touch to get to the end goal. It uses a variety of auditory interactions and clues to teach a child to make choices and uses a “teach and ask” type verbal interaction to do this. I learned that my daughter is an auditory learning. She does not need to “look” 100% to be successful. A glance is sufficient. She was listening to everything around her and creating her own cataloguing system in her head. Soma had great success with my daughter and helped her to learn to write her first short story and poem. Unfortunately, my daughter became ill and I could no longer travel to Texas to continue training with Soma. Years later Facilitated Communication came to me and I did not have to travel.
What did I have to lose? I couldn't care less about what the American Speech Language and Hearing Association had to say about FC. Not a single Speech Therapist had an ounce of success with my daughter in 15 years. The only thing ABA gave us was a large step towards potty training but mostly a severe case of boredom, frustrations, judgements and an empty bank account. While I love and admire every therapist that came in contact with my daughter they have been misguided by their professional organizations to believe that ONE SIZE FITS ALL. I AM HERE TO TELL YOU THIS IS AN UNINTENTIONAL LIE, BUT IT IS STILL A LIE. It is time for the American Psychological Association and American Speech Language and Hearing Specialists to drop their position statements and start listening to the people in the trenches! The parents live, breathe, network and investigate every aspect of Autism while the professionals sleep at night.
The reason that SOME people with Autism cannot overcome their motor challenges is because…….THEY CAN’T FEEL their bodies in space and the messages to their hands and feet get lost on their way to the muscles and joints. My daughter can type every step to complete a task but she cannot do the task physically. You can ask my daughter to match colors by placing cards together 2,000 times but you are insulting her intelligence and challenging her body. If you ask her what the color is she can type it. And we wonder why so many children with Autism are frustrated to the point of jumping up and down, crying, thrashing…! Just the thinking of the professionals can drive you to a point of madness. At my last and final IEP meeting for my daughter I made this statement “I now understand why so many kids with Autism want to bang their heads”. I kinda regret that statement out of respect for these kids but that was my level of frustration at the time. On the other hand, I have personally witnessed teenagers transform from what one might consider unruly and distressed to relatively calm, controlled, content young people after finding their voices through FC.
It will be a long time before the research shows us a path to improved communication and it is likely that there will be more than one path. Parents have to decide for themselves. I can only tell you to pay attention to the money trail. Often if you follow the money, you will have your answer. Listen to other parents. Don’t be afraid to go against the grain. You know your child best. DO NOT BELIEVE ANYONE WHO DOESN’T SEE YOUR CHILD’S INTELLIGENCE. I have seen enough to know that the greatest majority of kids on the spectrum are highly intelligent. Even the ones who look like they aren’t, most likely are. I have recently been pleasantly surprised and even a little ashamed to find out that someone who appeared to me to be limited was truly brilliant. ITS ANOTHER LIE! Most of these kids are brilliant. If you want to pursue FC or Rapid Prompting please please find someone to train you in best practices. It looks easy but it takes some time to develop good methods and self-monitoring. I would also recommend that a limited number of people learn to be a communication partner until the typer shows good skills and reliability over time.
I will leave you with a few words. “I want to shower”. These were my daughter’s words today when she got home from the park. She wrote those words late in the day at a time when she would not typically take a shower. We thought she was hungry or tired. I am blessed beyond measure that she can tell us “I want to go to college”, “the math is too easy, I want equations”, “I want to buy mom a blue purse” , or just ask for the simplest of things in life like “I want to shower”. If I am going to err, it will be erring on the side of my child and the hope of communication. We are where we are today despite the advice from professionals.