Communication is Life Changing: A Response to The Facilitator's Touch
By Terri Schuldt
Dear Age of Autism Readers:
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.
Terri Schuldt
I really agree. My son has severe apraxia (of body and mouth), yet learned to type after he learned to spell his thoughts through RPM.
While ABA promises evidence based practices, they have failed to deliver results. Sure, my son learned a few skills over the more than 10 years of ABA, but once he could communicate through typing, his access to life really began.
What I really see here is a physical challenge being seen as a behavioral challenge--and therapies are targeted in the wrong direction. Further, failure to take anxiety and sensory overload into consideration when working with non-speaking autistic people leads is a failure to actually help.
Posted by: Shanni | October 31, 2018 at 07:54 PM
Our 18 year old daughter and 20 year old son found their voices thru facilitated communication just over two years ago and are taking regular high school classes with facilitators successfully! I have an autism foundation and I am on the board of saved by typing in Carmel Indiana. We now help others communicate. Www.sharonsweb.com
Posted by: Sharon smith | October 31, 2018 at 08:52 AM
I think this - when something works for some people, then the why question comes up. The hypotheses that are created to explain the why may or may not be right. And when one hypothesis on "why" fails to be proved, it can be dejecting and easy to forget that there may well be other hypotheses behind the "why" waiting to be explored. And science continues to search for explanations, and technology continues to evolve in the attempt to explain things. But that has nothing to do with whether something works or not. It is aggravating that insurance companies delay coverage to try things since it can take decades to discover the "why" behind many interventions. They could probably make a killing offering separate "safe experimental intervention" add-on policies to the general public - safe being the operative word, of course.
http://www.jneurosci.org/content/38/36/7878
Posted by: Jenny | October 28, 2018 at 08:38 AM
Yes, parents need to trust themselves, and not be bullied by insurance companies and "experts".
Posted by: Joanie Calem | October 27, 2018 at 11:07 PM
About twenty-four years ago I found that supporting my three year old ASD child’s forearm gave that child the ability to hold a crayon and scribble on a drawing pad. This was before the Internet was available in our community and our local library had only about five books on autism so the term “facilitated communication” was unknown to me.
I don’t have the knowledge of the biology of muscles to be able to offer a logical, rational explanation for this phenomenon, all I remember is how pleased my child was to be able to draw.
Now, twenty-four years later, the handwriting is spikey and barely legible but that child can use a computer keyboard with facility (my offer to teach touch-typing was rejected over fifteen years ago).
Posted by: British Autism Mother | October 25, 2018 at 07:03 PM
Very eloquently stated. I, too, have seen miraculous transformations in non-verbal and low-verbal typers. It is life-changing for the typer and everyone around them! Being able to communicate is a basic necessity. FC enables them to do that and so much more. Once my son was PRESUMED COMPETENT, and the more he was treated as an intelligent young adult, the more he behaved like an intelligent young adult. Simply put, if you have low expectations for someone, they rarely exceed those expectations; but if you have high expectations for them, they will dazzle you!
Posted by: Dawn Young | October 25, 2018 at 01:37 PM
Thanks for this terrific post; it really resonated with me. It is truly tragic when the mainstream gangs up on a modality, be it FC or RPM or others, and shuts out the sub-sub-subsets of the population who really do benefit from it. We've been doing RPM for a little while now, and while it's no silver bullet, the flashes of insight it has provided are undeniable.
Posted by: R's dad | October 25, 2018 at 01:31 PM
Well-written, with some memorable statements:
“The parents live, breathe, network and investigate every aspect of Autism while the professionals sleep at night.”
and
“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’.”
and
“We are where we are today despite the advice from professionals.”
Take home message: Use and trust your parental instincts. Doing so will ensure that you will not always agree with the “professionals”. Be prepared for that and know that is okay, and necessary. Not every strategy, method, or protocol will work for every child/adult. What works for one won’t necessarily work for another. Don’t be discouraged. Keep plugging away. And know that nearly everything related to the world of “autism” is a challenge. There is nothing that comes easily, and knowing that helps one to better endure it.
Posted by: Laura Hayes | October 25, 2018 at 01:12 PM
This is a terrific article. Its long past time for some parents to say that a lot of money was wasted on some therapies. And if Rapid Prompting or FC can help a child to communicate effectively, its time to rejoice with tears in our eyes, and spread the word to all the autism parents. I would also chime in agreement that autistic kids are often very inteligent, but this is not obvious to many people . Doctors who have many autistic patients have noticed this also.
Posted by: Cherry Misra | October 25, 2018 at 12:19 PM
I am a bit confused. Soma has made it very clear, from what I have read and researched, that RPM is NOT to be confused with traditional FC. She appears to want to make that very clear so when you say years later FC came to you do you mean that you switched methodology?
Soma's books are very informative and she does appear to break everything down and teaches in a very specific heirarchy which is great. FC, at least old time FC, did not do that.
I agree that ABA can be very limiting when is comes to teaching communication and other domains and can create prompt dependency-- especially with low quality providers.
Posted by: huh? | October 25, 2018 at 11:38 AM