Background
For many years, therapists and caregivers have developed ways to assist those who don’t speak to express their needs, thoughts, emotions, and desires. These all fall under the huge umbrella of “alternative and augmentative communication (AAC).”
In recent times, many AAC methods have included a communication partner to assist the disabled person’s ability to point to letters and pictures by supporting their arms and hands. These newer methods of “facilitated communication” have fallen under severe scrutiny, and have been criticized by experts in the field of speech and language, who believe that the adult manipulates the non-speaker’s hand and arm to elicit the desired response. Yet, those who are working with students, who are successful at moving beyond having a communication partner, to becoming independent spellers, are certain that they are not influencing what their students are writing.
In the 1990s, Soma Mukhopadhyay, a highly educated chemist from India, was convinced that her non-speaking son Tito, diagnosed at age three with severe autism, had strong intellectual aptitude, despite his limited motor abilities. She tutored him tirelessly, prompting him to point to numbers and letters in books, while physically assisting his body through the motions.
By working with her son, Soma developed what she called the Rapid Prompting Method (RPM). Tito, now an adult, wrote a book, called How Can I Talk if my Lips Don’t Move?[1] when he was only a preteen. In 1999, experts from the National Autistic Society of Great Britain determined that Soma was correct: Tito was intellectually gifted. Soma and Tito later come to the United States to share their expertise with American children, and have settled in Austin, Texas.
This approach has proven to be a miracle for hundreds of nonspeaking individuals on the spectrum, RPM is an academic-based method in which the teacher creates a "teacher-student response loop.”
The Next Chapter of Facilitated Communication
On July 1, 2019, Judy Chinitz’s life and that of her 27-year-old nonspeaking son, Alex, drastically changed. At the insistence of a friend, Judy drove Alex from their home in New York to Virginia. Since his diagnosis of “regressive autism” at the age of two, Alex had attended special education classes, where he was exposed only to basic skills. His IQ measured around 40, and experts concurred that he was profoundly autistic and cognitively impaired. Judy believed that not only could he not speak or read, but that he did not even know the alphabet.
The purpose of this trip was for Alex to be evaluated by Elizabeth Vosseller, a seasoned speech-language pathologist, who had learned RPM while training with Soma around 2015-2016. Vosseller had been helping her clients use many types of assistive technology to communicate, and although many were successful, others struggled. In an attempt to help the unsuccessful communicators, Vosseller started using letterboards, which look like stencils. In 2017 word of Vosseller’s innovative adaptation of RPM, which she called Spelling to Communicate (S2C), spread like wildfire in the autism community.
What a shock, when after working with Alex, for only a short time, Elizabeth declared, “Your son is not cognitively impaired; he has perfect language in his brain.” Judy, who holds a master’s degree in Special Education, had been to hundreds of professionals, and none had ever told her, what she had always suspected: that her son had potential. She was one of the first “warrior moms,” and had spent a gazillion hours and hundreds of thousands of dollars researching and trying out dozens of traditional and alternative therapies. But because Alex could not communicate, his family and teachers believed that he had limited ability to learn.
Once Alex began to communicate, Judy discovered that he had been sneaking into his brother’s room, and reading his college texts. Not only could he read, think, and reason, he was able to comprehend French, do higher level mathematics, and discourse about history and geography! Judy could barely contain herself. She shared her joy on Facebook, and in my first interview with her on “The Autism Detectives.” Listen in at https://open.spotify.com/episode/3ted324ouoca4T6O9IqJut?si=a5d7b6d8e9634649
On the other side of the USA, a few months later in Portland, Oregon, J.B. Handley, a warrior dad and father of then 17-year-old Jamie, had a similar experience. J.B. had been active in the autism community for many years, and had bonded with families all over the world, who had nonspeaking children. In 2005, he had co-founded Generation Rescue, one of the first parent organizations that believed autism could be healed. A text from his friend Honey Rinicella, in Philadelphia, the mother of identical twin sons with autism, related the remarkable story of her nonspeaking son Vince, slightly older than Jamie, who over the course of only a few months, had emerged from his silent prison through the use of a letterboard.
Honey begged J.B. to take Jamie to be evaluated by Dawnmarie Gaivin (aka “DM”), an RN with two nonspeaking autistic sons, who lived near San Diego. DM and Dana Johnson, an occupational therapist in Tampa, Florida, had partnered with nonspeakers. J.B., like Judy, was blown away when, after a short time, Jamie began communicating. “We didn’t even know that Jamie could spell,” confessed Handley.
Apraxia
Both Judy and J.B. were told that their sons were unable to speak, because they had apraxia. “Apraxia” and its less severe cousin “dyspraxia” are motor impairments that affect the coordination of both gross and fine motor skills, and are common in autism. Read about the relationship between reflexes and apraxia in Chapter 11.
Because the brain and body are “out of sync”, an individual with even mild dyspraxia has difficulty initiating action, motor planning, and maintaining momentum to complete an action. Often, the person they are trying to communicate with does not allow sufficient time for their minds and bodies to coordinate, so lack of understanding is assumed. “My body is not my friend,” claims an anonymous speller. “I cannot count on it to do what my brain tells it to do in a reliable fashion.”
Judy and J.B. had heard of apraxia and dyspraxia over the years from both speech-language pathologists, and occupational therapists. They understood how their sons’ motor impairments had affected their ability to initiate play, ride a bike, write, and participate in sports. But no one had ever explained that speech is the most complex motor skill that we humans perform. To make words, the lips, tongue, cheeks, throat and diaphragm all must work together as precisely as instruments in a symphony orchestra.
What they didn’t “get” is that speech is motor, while language is cognitive. Remember Stephen Hawking, the brilliant physicist, with the neurological disease, Amyotrophic Lateral Sclerosis (ALS)? His disease robbed him of purposeful motor skills, including the ability to talk for the last 30 years of his life. Yet, no one questioned his intelligence, because he had proven he was brilliant before he got sick. Alex, Jamie, and other nonspeakers like them, had not, so no one had “assumed competence.” A basic tenet of all methodologies that use spelling as communication is ASSUME COMPETENCE.
Dyspraxia
While mild dyspraxia is more difficult to diagnose than apraxia, it can interfere with verbal communication in those who are minimally or unreliably speaking. Read about dyspraxia in autism in Chapter 13. Some of these individuals may have an autism diagnosis, but not always. Experts have demonstrated that some of those with Down syndrome, who appear cognitively impaired, have a great deal to say when taught to use a letterboard. Those with “learning disabilities” can also show significantly better expressive language when communicating with a letterboard than with pencil and paper, or even on a computer. In the words of a 20-year-old young man I know, “I think that I’m challenged by communication in a way that is isolating, because I seem like I can talk, but mostly what I say only scratches the surface.”
Bypassing Apraxia and Dyspraxia
S2C teaches individuals with autism, Down syndrome, cerebral palsy, and other motor challenges, how to master the purposeful motor skills necessary to communicate by pointing to letters, one by one, and to spell as an alternative means of communication (AAC). The goal is to achieve synchrony between the brain and body.
Skilled and rigorously trained helpers called “communication and regulation partners”(CRPs) teach purposeful motor skills using a hierarchy of verbal and gestural prompts. With repeated practice, new neural pathways myelinate, and motor skills improve.
Back to RPM. So, while similar, RPM and S2C are actually inversely related. RPM is an EDUCATIONAL TECHNIQUE FIRST; communication is a byproduct, not the primary objective. S2C, which evolved from RPM, is a COMMUNICATION METHOD FIRST, and a byproduct is that students can then access academics. That distinction matters because it explains why some things, like touching the student, are acceptable in RPM, but are not part of the practice standards in S2C and vice versa. What these two methods have in common is that they use the same “low tech” assistive technology tools with different approaches.
Growing Kids Therapy Center (GKTC) and The International Association for Spelling as Communication (I-ASC)
GKTC is the center in Herndon, VA to which Judy travelled for Alex to be initially evaluated by Elizabeth Vosseller. GKTC offers both in-person and virtual services assisting families near and far. Vosseller is the Executive Director of I-ASC (pronounced I Ask), where DM and Dana Johnson helped define the standards and scope of S2C, before they left to form Spellers Method. The mission of this 501c-3 non-profit, is to advance communication access for non-speaking individuals globally, through training, education, advocacy, and research. www.GrowingKidsTherapy.com and www.i-asc.org
Spellers Method
Visual Skills and Dyspraxia
DM and Dana recognized not only the necessity of efficient, purposeful motor skills, but also the role of underlying deficient visual and visual-motor skills in their students with autism.
They were both familiar with developmental optometry, and coincidentally, DM’s office was in the same town as neurodevelopmental optometrist, Susan Daniel, who also has an adult nonspeaking son with autism.
Return to Chapter 14 to review the relationship between motor and vision skills, and how inefficient eye movements can interfere with all aspects of learning and behavior. Recall that many individuals with autism have a strabismus, or eye turn that prevents them from having efficient binocular vision and depth perception. Understand that vision therapy can remediate this condition, and teach the eyes and brain to work together consistently and effectively.
Dr. Daniel became interested in using a letterboard with her son. She fully understood that apraxia affects many aspects of vision, including eye movements and fixation. She observed how difficult it was for some nonspeakers to scan the letterboard containing the entire alphabet to spell, and suggested modifications to the more traditional letterboards used in RPM and S2C. These modified letterboards help to accommodate for the visual-motor differences unique to each student. She also learned firsthand, from her own son, how starting on letterboards, where the alphabet is divided onto three separate boards, helped make the letter selection easier, in the first stages of learning to spell to communicate.
Modified letterboards became a key to success for struggling students by eliciting increasingly complex communication. Dr. Daniel’s evaluation of foundational visual skills in DM’s and Dana’s clients were an important addition to success in spelling with letterboards, because the vision therapy programs she prescribed served to remediate deficient visual skills. Typical students can hold focus on a target for at least ten seconds; many nonspeakers can fixate for only a second or two. With customized vision therapy, designed to meet each individual’s needs, DM, Dana and Susan watched with awe as nonspeakers with various degrees of dyspraxia learned how to control their strabismus and express themselves effectively.
Students progress from pointing to letters on a single letterboard containing only seven or eight letters each, to pointing to letters on three letterboards with all 26 letters of the English alphabet. Eventually, as motor and visual skills progress, students type on a traditional keyboard. Responses move from concrete one word answers to specific questions to spontaneous writing, abstract thinking, and even poetry. If you are interested in a collection of poetry, songs and stories produced by nonspeakers, check out Spellbound: The Voices of the Silent[2], edited by Judy Chinitz.
DM and Dana became committed to incorporating occupational and vision therapy from developmental optometrists to improve intentional motor and visual skills. They were also offering letterboard modifications to help certain students access spelling for communication, and were focusing on parent coaching to round out a supportive program. In 2022, they rebranded the expanded program they were offering as Spellers Method (SM).
The goals of the Spellers Method grew to be more than just a communication method – this approach became a doorway into a life full of agency and autonomy. DM and Dana believe firmly that it is a parent-driven model that is guided by a provider, not the other way around. And they strongly believe that if they aren’t working themselves out of a job with every speller, then they aren’t doing their job correctly!
So, for clarity, S2C and SM are related. Spellers Method delivers truly holistic care to spellers and their families, by including occupational and vision therapy as inherent components. The founders coach parents and caregivers to become fluent Communication Partners and confident “motor coaches” of their children with apraxia. They teach the intentional motor skills that each student needs, including initiation and inhibition. The end result is that these previously “locked in” nonspeakers are not only able to communicate autonomously, but to hold jobs, attend college, and eventually, live independently. DM and Dana have a Facebook group called Spellers Community, that parents and spellers using all methods can join for information and support.
Spellers the Movie
What if everything you thought you knew about autism was wrong? That is the opening line of the full length documentary, Spellers the Movie, produced by Jenny McCarthy-Wahlberg and her husband Donnie, and showcasing EV, DM, and Dana. The film answers that question through the stories of eight nonspeakers—Aydan, Evan, Sid, Maddie, Jamie, Vince, Cade, and Elizabeth—who all found their voice through the miraculous process of S2C and RPM. As Jamie explains, “we think, feel, and learn just like everyone else.”
Spellers was the Winner of the Best Documentary at the Phoenix film festival in April, 2023, and was funded by The Spellers Freedom Foundation, a 501c3, not-for-profit whose Board of Directors is composed of nonspeaking individuals, passionate professionals and dedicated parents advocating for the presumption of competence and the empowerment of nonspeakers everywhere. They believe that “communication is a fundamental right, essential for claiming meaningful education, employment, and relationships.[3]” This film is available for viewing online, and at selected locations around the globe. www.SpellersTheMovie.com.
Spellers Information
855-326-3727
This website offers “Spellers Method” training programs, Spellers Connect Conference, Spellers University, Spellers Freedom Foundation, and the Spellers Center network.
Spellers Center San Diego
405 Oceanside Blvd. Suite B
Oceanside, CA 92056
760-536-3896
Speller Center Tampa
1816 Health Care Drive
Trinity, FL 34655
727-275-1155
Dawn and Dana have written The Spellers Guidebook[4] for anyone desiring to pursue Spellers Method for a non- or unreliable speaker they know. This terrific book shows the theory and steps behind this approach They explain that, with time and practice, nonspeakers can develop accuracy, and achieve open, fluent communication. Each individual is unique; the time from introduction to fluency depends on many factors. Dawn explains the process in an interview she did for my podcast, “The Autism Detective.” Listen in at https://open.spotify.com/episode/62HvpmEgwLLqWxnYZwsAHu?si=k2TCWkzbTByBucEvFlK1QQ
Mouth-to-Hand Learning Center (M2H)
Since Alex began spelling, Judy has devoted herself to bringing the gift of spelling using letterboards to other nonspeakers by opening the Mouth-to-Hand Learning Center in Mt. Kisco, NY. There she offers individual sessions and community classes in an integrated environment that provides learning, friendship and fun. Students can study, science, history, literature, creative writing, music appreciation, and other subjects that they were denied in their special education placements. In addition to the enrichment of the course contents, these previously dumbed-down young adults are forming deep friendships with both speaking and nonspeaking peers. Their happiness and excitement in learning is palpable.
Judy updates us in a second “Autism Detectives”episode at https://open.spotify.com/episode/1wZSJrIRti5TOjMxfjIoOV?si=4d424c63bc624a29
To learn more about M2H, go to www.mouthtohandlearning.com
Spelling to Communicate in School
While many of the successful spellers are young adults, who have aged out of school, some are still in high school, and even in middle and elementary school. Eager parents, attempting to write the use of letterboards into their children’s IEPs often face resistance. Why? One reason is that school systems do not yet have trained communication partners. Another is that in 2017, the American Speech-Language Hearing Association (ASHA) issued a Position Statement declaring the use of “Facilitated Communication” is a discredited technique that should not be used.[5] This outdated opinion clearly needs to be reevaluated and changed.
All those in the Spellers community urge parents to work closely with their school district’s Special Education Departments to educate them on the benefits of spelling communication as an efficacious tool to maximize their children’s potential. Like many new ideas and techniques, this one may need research and time to convince skeptics of its value. As DM says, “Once you have seen your own child spell out their thoughts and ideas, you cannot unsee it! The truth becomes self-evident.
And what has happened to Alex and Jamie since beginning to spell? Both are works in progress. In 2021, Alex passed the New York State high school equivalency exam with distinction, and was accepted into the screen and play writing program at the State University of New York at Purchase. Both Alex and Jamie began taking college level courses fewer than two years after beginning to spell. In 2021 Father and son Handley published a book about their experience, Underestimated: An Autism Miracle[6]. In 2024 you will find Jamie in episodes of the five part made-for-TV DocuSeries: “UnderEstimated: The Heroic Rise of Nonspeaking Spellers.” The importance of ocular-motor skills in spelling is featured in Episode 4. Access it at www.Underestimated.tv
Take-Home Points
Now is an amazing time to be a person with a disability, because technology and creativity have opened doors to new kinds of communication and learning. Spelling to Communicate and the Spellers Method have absolutely leveled the playing field for nonspeakers. Today, approximately 500 providers of several methods have been trained.
Parents need to do their research and ask lots of questions to find a provider they are most comfortable with. To quote DM, “You are in charge of this journey with your child…If you believe in neuroplasticity, then you already know a little bit about how the brain can rewire.”
Bottom line: “Wake up to the reality that we may have underestimated the abilities of more than an estimated 30 million nonspeaking people worldwide.” From this time forth: Assume Competence!
[1] Mukhhopadhyay, T. How Can I Talk if My Lips Don’t Move? NY, NY, Arcade, 2008.
[2] Chinitz JH. Spellbound: The Voices of the Silent. NY, NY. The Bookbound Initiative, 2023.
[3] www.SpellersFreedomFoundation.org Accessed April 2, 2024.
[4] Gaivin DM, Johnson D. The Spellers Guidebook: Practical Advice for Parents and Students. NY, NY: Skyhorse Publishing, 2023.
[5] https://www.asha.org/policy/PS2018-00352/ Accessed April 10, 2024.
[6] Handley JB, Handley J. Underestimated : An Autism Miracle. NY, NY: Skyhorse Publishing, 2021.
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