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Cracking the Autism code

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Breaking the autism code

Gregory Tino was 24 years old, and he had not spoken to anyone since he was a toddler. Not in the ordinary way, in any case. A nonspeaking autistic person, his language consisted mostly of mimicking snippets of television and movie scripts. He couldn’t ask for what he wanted to eat, much less hold a conversation. 

Gregory’s mother Linda doted on him, however, and was patient through his youth. She and her husband cared for him through his seizures, his emotional meltdowns and his violent outbursts; once he pummeled her because there was no hot water for a shower. 

She never understood these fits from her sensitive son, but his family loved him and cared for him like he was a child, even while his body grew into a man. They adapted their outings for Gregory, made his food for him, and gave him Sesame Street and Barney to watch. He spent a good deal of time on the sofa watching YouTube.

In May 2017, Linda took Gregory to a center called Inside Voice in Philadelphia, PA. She’d heard it taught kids a little-known therapy called Spelling to Communicate (S2C), a method of spelling to speak by pointing to letters. 

Linda didn’t tell Gregory where she was taking him because she didn’t think he would understand. The therapist at Inside Voice treated Gregory as if he was an adult, however; she sat him down and taught him how to use his arm muscles to point to stencil cut-out letters on a hard plastic board. It was grueling work, but he pointed awkwardly to each letter she asked for and it was clear the task was becoming easier for him toward the end of the session. Then the therapist read a story about an astronaut.

“Would you ever like to go to outer space, Gregory?” she asked.

Linda was watching intently from a chair a few feet behind her son as he painstakingly poked out his answer, one letter at a time:

“N-O   T-H-A-N-K-S   M-Y   W-O-R-L-D   I-S   R-I-G-H-T   H-E-R-E.”

“That moment,” Linda recalls, “that was something he never could have said with his mouth.” She sobbed in awe at the simple sentence that “just said so much.” Gregory was listening. He could understand. He could spell. He knew his family, he was happy where he was, and he wanted to speak. 

“It was completely life-changing,” Linda said.

“That is the best moment in my life so far,” Gregory spells. “It is like winning that lottery that you have always dreamed of.”

There are so many momentous stories of autistic young adults whose unrealized abilities are being discovered through this little-known communication therapy.

Gregory spelled out a book by poking out one letter at a time, which his mother, his “communication partner,” wrote down as he spelled. The Autistic Mind Finally Speaks: Letterboard Thoughts, which was published in October 2020, has more than 100 five-star reviews on Amazon. It offers the 27-year-old’s profound and often poetic insights into his unique sensory processing and perceptions of the world around him. 

It’s also a heartbreaking account from a young man who spent most of his life in a sort of solitary confinement, treated by everyone as a person who was mentally disabled or just ‘not there’ because he was unable to express his deep intellect and unique gifts.

“I am proving that autism is not a curse, but a blessing that needs to be uncovered,” writes Gregory.

Underestimated

J.B. Handley and his 18-year-old son Jamison (Jamie) published their book, Underestimated (Skyhorse Publishing, 2021), this March (see box, page 33). It recounts the father and son’s poignant experience breaking out of what Jamie calls a “prison of silence” to open and fluid communication spelling on a letterboard, revealing Jamie’s astonishing intellectual depth.

At 17, Jamie, who has autism, was nonverbal and considered so severely disabled that he had been relegated to a “life skills” class where the focus was on teaching him to do his laundry, use a debit card and keep him from injuring himself. 

Jamie’s father, J.B., is a Stanford-trained financier and cofounder of a major private equity firm. He is also a vaccine safety advocate who established the group Generation Rescue 16 years ago to find ways to help autistic children recover. 

Their book begins in 2019, when J.B. thought he had exhausted every avenue for recovering his head-banging, “stimming” teen. Jamie seemed absent most of the time, vacantly tearing leaves into small bits in peaceful moments, and at times wildly biting his arm and wailing for reasons that no one understood.

Now, after discovering Spelling to Communicate, Jamie wants to bring it to everyone who can be freed by it. “I really want others to know that they can do this,” he spelled to his dad. “I think my proudest accomplishment will be the people I inspire.”

For J.B., discovering his son’s brilliance and communicating with him is like “a permanent knife in my heart literally got pulled out. It’s gone.”

These stories—and hundreds more—are fanning a grassroots revolution in the common understanding of nonspeaking autism. They throw a heap of understandable (but dead wrong) assumptions about the disorder and a vast library of about 60 years of research—thousands of psychology and medical papers—on a bonfire.  

Science has mistaken the severe fine motor skill impairment of people with nonspeaking autism for intellectual disability. One after another, these individuals are proving otherwise; they can’t speak but they are just as smart as others their age—if not smarter. Many have savant-like capabilities.

The implications for possibly three to five million nonspeaking autistic children and adults in the United States alone are profound.

‘I can’t make my body do it’

All communication is based on fine motor abilities. Speech is a motor skill. Typing is a motor skill. Even eye tracking to read is a motor skill. Thinking, however, is cognitive. Language is cognitive. 

It is well established that people with nonspeaking autism have severely impaired fine motor skills. They can kick and bang their head, punch or push, all gross motor actions, but their fine motor skills—those controlling their fingers and other small muscles—are critically hampered. They are plagued by motor planning issues, distractions and obsessive and repetitive behaviors. 

An area of their brains called the supplemental motor cortex, which controls voluntary movement, is affected. This results in apraxia, a condition whereby they are physically willing and able to do some things, but their brains won’t let them.

“It’s not about whether there is brain damage,” J.B. Handley told What Doctors Don’t Tell You. “It’s about where it is.”

By giving apraxic autistic individuals a means to use their intact gross motor skills—large muscle movements—to spell, programs like Spelling to Communicate and its precursor, the Rapid Prompting Method (RPM), free them to reveal their very high-functioning cognition.

Elizabeth Vosseller, a therapist who has been working with nonspeaking people for about 25 years, is the inventor of Spelling to Communicate, and founder of the Growing Therapy Center in Herndon, Virginia, and the International Association for Spelling as Communication, which trains practitioners in the method.

According to Elizabeth Zielinski, the mother of an autistic boy who attends the Center,  “Of all the therapies we have tried, this is the single most powerful and most effective thing we’ve done.”1 

Vosseller says the traditional autism therapies all assume that the problems of autistic people are cognitive or behavioral, not motor. “It’s not an issue of  ‘I don’t understand.’ It’s not an issue of  ‘I don’t want to.’ It’s an issue of  ‘I can’t make my body do it,’” she says.

Presume competence

Dawnmarie Gaivin, a Spelling to Communicate therapist who helped her son Evan learn to use a letterboard, says the most important aspect of teaching the method is “presuming competence” of the individual—which is challenging when they don’t seem to be listening or responding. 

 She had tried training Evan for a number of years herself without making much progress. One of the biggest hurdles in hindsight was that she had assumed that Evan couldn’t spell and had him point to pictures of simple objects instead. 

When Evan had a chance to try Vosseller’s method with a therapist, Dawnmarie was amazed. She was sitting with a friend a few feet behind Evan, who was 12 years old. The therapist read him a poem about nature and the love of God. “What is another word for God’s love,” she asked Evan.

Dawnmarie looked at her friend and raised her eyebrows. She couldn’t think of another word for God’s love herself and she felt this was way beyond Evan’s capabilities.  

Evan poked the pencil through the letter stencils and spelled:

 “B-E-N-E-V-O-L-E-N-C-E.”

Dawnmarie said the experience completely changed their lives.

Vosseller created Spelling to Communicate by adapting an earlier communication therapy called the Rapid Prompting Method (RPM), developed in the 1990s by Soma Mukhopadhyay, who came up with it to help her nonspeaking autistic son Tito to communicate and get an education. 

Her method won media acclaim, and a full 18 years ago it was featured on 60 Minutes as an “extraordinary breakthrough” for autistic children in a documentary clearly showing children spelling independently.2 

But then suddenly the method was dismissed—and the most hopeful message about autism on the planet was suddenly erased from public discussion. Wikipedia now calls it “pseudoscientific” and compares it to a discredited method called “facilitated communication” used for patients with dementia. 

Quiet people, loud minds

How can these autistic kids who have spent their entire lives in special needs classrooms have learned to spell and write so well?

J.B. Handley thinks that some things, like the spelling aptitude of nonspeaking autistic people, are understandable. They pick it up from their surroundings, even if they are not taught to spell directly. 

Just as people with visual impairments often develop highly acute hearing, it seems that at least some nonspeaking autistic people have developed other perceptive abilities to an extraordinary degree. 

Maybe something about being forced into silence pushes the brain to open unusual avenues. Handley quotes theoretical physicist Stephen Hawking, who said, “Quiet people have the loudest minds.”

But some other traits of people with nonspeaking autism—such as incredible math aptitude despite having been taught only basic arithmetic, or the ability to write computer code, as one young man who recently broke out revealed—are more difficult to explain. 

This realization of the cognitive potential in people with nonspeaking autism basically shreds 60 years or so of medical research into autism that has treated the condition as a cognitive and behavioral disorder as well as a movement disorder. Most teaching therapies and manuals that are built around this misconception are useless in the presumption-of-competence paradigm.

The social scientists have had it all wrong about autistic people being socially withdrawn and distant, too. “Autism is often characterized as the person has no emotion or feeling,” writes Gregory Tino. “It is actually the opposite. We have an over-abundance of emotion, and our stupid bodies won’t let us show it!”

For example, Tino says, he has a friend who has been so distressed about the pandemic that he has been hitting himself as a way to release pent-up anxiety.

The best-selling book The Reason I Jump (Random House, 2016) was written by nonspeaking autistic speller Naoki Higashida when he was just 13 years old, and was made into a film that was released this year. It describes Higashida’s rich experience of nonspeaking autism, and it explains so many unique sensory perceptions and the difficulties of uncontrollable behavior.

Tino described his particular gift of synesthesia. “When I listen to music, I see gorgeous colors. Elvis Presley always enables me to see gold and yellow fluttering down from the sky. Nat King Cole and his “Christmas Song” has me seeing hues of purple, maroon and brown.”

They are not ordinary colors, he added, but “rich and vibrant and unlike the colors on earth,” and some music is accompanied by a tingling sensation all over his body.

Tino says this ability is the “coolest part of me” that he wishes he could share, but much of the condition is his heartbreaking inability to control his body.

‘They talk to me like I understand’

In a Zoom session with Gregory, a camera is placed behind him so I can see what he is doing from both in front and behind. While we are working out the cameras, Gregory does not appear to be interested. At one point he looks directly at me on the screen, but afterwards he doesn’t seem to be even aware that I am there. 

While Linda and I are chatting, he is looking off screen, talking to himself and making unintelligible sounds. He appears to not be listening to us speak. Each time I ask him a question, however, he immediately turns and motions to his card. 

Linda lifts the card (if it’s not upright already), and I can see him from behind, pointing out his answer, one letter at a time. 

His mother is not touching him in any way, and she is holding the card in a fixed position on the table as he chooses the letters. There is no prompting or encouragement at all, and Linda calls out the letters clearly after he points to them and then says the words aloud in a string.

I ask him what the most important change has been in his life since he learned to spell on a letterboard.

“I am going to say that the thing that has changed the most is the way people treat me. They talk to me like I understand everything which I do!” he writes, adding the exclamation mark.

It turns out that Gregory and Jamie, like countless other children and adults whose bodies won’t do what they want, have a lot to say.

Gregory Tino was 24 when his life was transformed by Spelling to Communicate. “It is like winning that lottery that you have always dreamed of,” he says

Professional denial

Being able to communicate changes the world for these autistic people, but it is not a cure for their neurological dysfunction. As Danny Whitty, a nonspeaking autistic man wrote in an article on Medium last year, “my autism is a profound gift, but also an awful prison. It is a trapped experience. It prevents me from communicating easily, from being able to control harmful compulsions, from enjoying my brilliant potential.”

“I am an autistic who is desperate for a cure to the devastating sides of autism,” he said.3 

Considering the potential of the Spelling to Communicate therapy to free people to communicate and to give the world the gifts of their unique experiences and profound insights, you would think that the possibility of fixing the real underlying areas of brain injury in autism would have the behavioral science world on fire.

Instead, it has met with a wall of professional denial. The American Speech-Language-Hearing Association (ASHA) issued a policy statement in 2018 about the Rapid Prompting Method and included Spelling to Communicate under its umbrella, equating both with “facilitated communication” and dismissing them, stating, “There is no scientific evidence supporting the assertion that messages produced using RPM reflect the communication of the person with a disability.”

Because it requires the assistance of another person who holds a letterboard in front of users (although many letterboarders have progressed beyond this initial phase to keyboards and completely independent typing), ASHA has assumed that the assistants are cueing the learners to point to particular letters. It rejects the possibility that any nonspeaking autistic people are actually spelling their own thoughts.

Remarkably, no one on ASHA’s ad hoc committee that considered RPM had ever observed a nonspeaking autistic person communicate by spelling in person.

A grassroots group called United for Communication Choice (UCC) said that the committee considering the teaching method also excluded the opinions of anyone who opposed the policy from decision-makers. 

Language beyond expectations

UCC collected 150 letters from former ASHA members, speech and language pathologists, occupational therapists, special educators, neuroscientists, physicians, psychologists, parents, siblings and, most importantly, users themselves to object to ASHA’s policy statement, which prevents the teaching style from being used in public classrooms.

One of the letters came from Jessica Aysseh, a longtime public school teacher from Fairfield, CT, who told ASHA that she had tried every mainstream method to help her daughter Coco, who was adopted from China at 22 months of age. 

After using the publicly accepted teaching services from 2008 to 2015, Coco mastered the ability—only when prompted—to add a noun to the end of the phrase “I want” to request one of four or five items chosen by her speech and language therapist. At age 10, Coco’s school therapist reported she could request one of nine items on a page when prompted. 

The experts working with Coco believed she had limited language and cognitive ability and refused to consider alternative teaching styles.

When Aysseh introduced Coco to RPM at age 10, she gradually learned to spell on a letterboard, which her mother says, “opened the world to her.” By age 13 she was writing poetry, making friends, communicating with family fluently using her letterboard and planning to attend college. 

Coco had been evaluated by three experienced speech and language pathologists who were members of ASHA and were initially skeptical that Spelling to Communicate could lead to independent communication. All three confirmed that their assessments found Coco was indeed communicating independently and that she also clearly possessed language beyond expectations for her age. 

“I cannot imagine anyone interacting with my daughter in person would want to then deny her the ability to spell her thoughts,” Aysseh wrote ASHA. 

“I cannot imagine anyone wanting to sentence her to a life of touching teacher-chosen buttons on an app that only addresses her basic needs after they witnessed her describing her thoughts, desires, fears and poetic voice. Please—anyone from ASHA—come meet her.”

‘We are not aliens’

Since he has become fluent and “open” on the letterboard—able to spontaneously communicate his wants, needs and thoughts—Jamie has formed a group with five other young men who have recently learned to spell. They call themselves the “Dude Bros,” and they meet online every Friday to chat about life and love, as well as their desires to champion other nonspeakers. 

Each of them has a short chapter in Underestimated to share their thoughts, which are often poetic.

One of these young men is 20-year-old Vince Rinicella from Philadelphia, PA. “We are not aliens. We have the brain, heart, dreams and desires of a neurotypical person,” he spells. 

The main difference lies in the way we process information and express our emotions. Upon meeting us you must always assume intellect. 

We may not appear to be your definition of smart, but there is so much more to us than you may realize. Never underestimate a nonverbal person, we are fighters.”

“Respect only comes when others view you as having worth,” writes 19-year-old Ethan from Portland, Oregon, via letterboard. “Humans should bestow kindness in places they don’t often travel. I shouldn’t have to please you to get your respect.”

“This week I learned what a black hole is. I learned about the event horizon,” Ethan says. “One can get into the event horizon, but one can never get out. It is necessary to travel faster than the speed of light to escape. No one knows what it is to be beyond this border.

“I do. It is where I lived before I used a board to spell. I hereby leverage my words against your expectations of me.”

Jamie and his father, J.B., describe his escape from a “prison of silence” in their new book, Underestimated: An Autism Miracle (Skyhorse, 2021)

Scientific confirmation

If there was need for scientific validation for letterboard communication, a paper published by three University of Virginia researchers in Scientific Reports in the spring of 2020 offered it in spades and directly countered ASHA’s policy.

The researchers used advanced head-mounted eye-tracking technology to study a sample of nine nonspeaking autistic letterboard users. They measured the speed and accuracy with which they looked at and pointed to letters as they responded to questions on a topic that was new to them. 

The spellers pointed to about one letter per second, rarely made spelling errors, and visually fixated on most letters for about half a second before pointing to them, in the same manner that non-autistic typers would. 

The researchers concluded, “These findings render a cueing account of participants’ performance unlikely: The speed, accuracy, timing and visual fixation patterns suggest that participants pointed to letters they selected themselves, not letters they were directed to by the assistant. The blanket dismissal of assisted autistic communication is therefore unwarranted.”4 

Nevertheless, nearly three years on and more than two decades after spelling was first revealed as the most exciting breakthrough in the world of autism learning, ASHA’s policy remains in place. 

One of the leading opponents to spelling for nonspeakers, cited by Wikipedia, is American psychologist Stuart Vyse. Vyse dismisses the Scientific Reports study in his “Skeptical Inquirer” blog and calls the teaching style “unfounded and potentially harmful.”

Vyse implies in his writing, and did not deny when asked by email, that he, as a behavioral scientist, has never actually used the most obvious scientific tool of direct observation of the RPM or Spelling to Communicate methods. He has never seen an autistic person communicate by spelling in person. 

Yet he writes that “until someone has the courage to step forward and test RPM using simple methods. . . this technique will remain controversial, in doubt, and discouraged by large segments of the 

scientific and professional communities.”5

I asked Gregory Tino what he would say to scientists and skeptics who don’t believe that he is the person behind his spelling and his book. 

“I would be kind but tell them they are as wrong as they can be and they need to change their perception of what autism is,” Tino spells. “I wish and pray that people will change their opinion of autism and realize that we are one of the medical mysteries of our time.”  

Gregory Tino holding his memoir, The Autistic Mind Finally Speaks: Letterboard Thoughts (2020). “I am proving that autism is not a curse, but a blessing that needs to be uncovered.” 

Where to start Spelling to Communicate

An overarching message from people with autism who use letterboards to speak, as well as their parents and the practitioners in the field, is belief in the potential of the method to unlock just about anyone who wants to try. 

“Anyone who is nonspeaking or minimally speaking can learn to do this,” said Honey Rinicella, who never imagined the things her 20-year-old son Vince has revealed about himself in under two years since he was given the opportunity to communicate via Spelling to Communicate

If you have a child or know someone who is nonspeaking autistic and might be trapped in a prison of silence, here are some resources to get started with Spelling to Communicate.

Growing Kids Therapy Center in Herndon, VA, founded and run by Elizabeth Vosseller, who developed Spelling to Communicate, offers individual sessions for nonspeaking people and their families and communication partners. Find them at: www.growingkidstherapy.com.

The International Association for Spelling as Communication is the nonprofit Vosseller founded to promote alternative communication methods, especially by spelling and typing, for nonspeaking or minimally speaking individuals. It offers practitioner training and a map directory of therapists who have been through its programs. Visit: www.i-asc.org/training.

Inside Voice, in Philadelphia, PA, is another center that offers Spelling to Communicate to people with autism over the age of 16. Learn more at: www.aalive.org/about-inside-voice.

Spellers Learn is a platform that offers parents and communication partners teaching lessons on interesting topics, like geography or history, for example, that help build the connection between an autistic person’s brain and body—or cognitive and motor skills—and help both autistic people and their communication partners to practice fluency while learning. Check out: www.spellerslearn.com.  

 

References

1 

www.youtube.com/watch?v=oYz8OZOT3eU

2 

www.youtube.com/watch?v=QfT-2vEPxIA

3 

medium.com/@danny.whitty2

4 

Sci Rep, 2020; 10: 7882

5 

skepticalinquirer.org, May 20, 2020

Article Topics: Autism
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