HIGHLAND HEIGHTS, Ohio — For more than two decades, Talia Zimmerman wasn’t able to communicate using more than a single word or two.

Then, 18 months ago, the floodgates opened.

Among the things she was finally able to tell her parents: Her favorite color is red. Da Vinci’s most famous painting is the Mona Lisa. And she’s grateful that she’s finally able to be understood.

“We’re finally getting to know our daughter,” said Lisa Zimmerman, of Shaker Heights, who credits a relatively new communication method, Spelling to Communicate, with transforming the life of her daughter with autism — and her own.

In recent months, Talia, age 25, has learned to use a letter board to communicate. Pointing at letters on a panel held up by a trained practitioner, she’s able to spell out words, sentences, even complex thoughts, in response to questions about everything from what she likes to eat to the benefits of gratitude.

Among the topics she’s voiced an opinion about in recent months: She thinks the Cleveland Guardians should have stayed the Indians and, if given the opportunity to travel anywhere, she would like to visit some snowy mountains.

Her mom solved that last wish by taking Talia on a mother-daughter rail trip through western Canada last April.

“Talia now is dissatisfied answering any question with one word,” said her dad, Rob Zimmerman. “She likes to answer in paragraphs.”

Her parents, among others, have been astounded by what they’ve witnessed.

“She’s a happier person. We’re a happier family,” said Rob Zimmerman. “She has a much brighter future than we ever thought.”

Autism diagnosis

At age 3, Talia was just starting to form sentences when she regressed to single words. Her child-care provider suggested that the Zimmermans get their daughter evaluated for autism.

A neurologist confirmed the diagnosis.

“I didn’t know anything about autism,” recalled Lisa Zimmerman. “It was very upsetting.”

For the next 20 years, Talia would communicate almost exclusively in single words, usually to describe basic needs — “water,” for example, and “ice cream.”

“She’s always said ‘I love you,'” said Lisa. “That, she never lost.”

Over the decades, the Zimmermans tried program after program — from speech therapy and applied behavior analysis to chelation therapy, a controversial treatment that removes heavy metals from the body — in an effort to help their daughter emerge from the profound isolation that is autism.

Nothing worked.

As many as 40% of individuals with autism are nonverbal, meaning they use few or no words to communicate. Many of them are also presumed to be cognitively impaired — in part, because it is so difficult to assess the intelligence of someone who can’t readily communicate.

Talia attended both the Shaker Heights City School District and the Monarch Center for Autism, also in Shaker Heights.

Her education, according to her parents, was very remedial.

“Every assessment, they would use the phrase, ‘severe intellectual disability.’ That’s what they kept saying,” said Lisa Zimmerman. “But there was part of me that always thought she could do more.”

Introduction to spelling

In June 2023, Lisa Zimmerman ran into her friend Megan Velotta at a Cleveland Yoga class. Velotta and Zimmerman had become acquainted because they both had children enrolled at the Monarch School.

Earlier, Velotta had recommended a book to Lisa called “Underestimated,” which recounts the tale of a nonverbal boy with autism who is finally able to communicate at age 17, using the Spelling to Communicate method. Velotta insisted that Lisa read it.

“I was tenacious,” recalled Velotta. “I told her, ‘Read this book and call me.'”

Lisa finally read the book, and was moved by it. Ultimately, however, she figured it was one person’s success story — an anecdotal tale that didn’t necessarily have relevance to her own daughter’s struggle.

Then Velotta invited Lisa to come see her son, Charlie, demonstrate the Spelling to Communicate program at an office in Highland Heights.

Lisa, after years of frustration, allowed herself to feel hopeful again.

“I came home and told Rob, I think we should try it. I think it might be something.”

History of spelling, and controversy

Spelling to Communicate, commonly abbreviated as S2C, was developed a decade ago by Virginia-based speech therapist Elizabeth Vosseller. It features trained professionals who use large letter boards to start, and eventually computer keyboards, in an effort to elicit words and phrases from nonspeakers.

The nonprofit International Association for Spelling as Communication estimates that approximately 10,000 nonspeakers are using the method.

There are other programs that operate similarly, including the Spellers Method and the Rapid Prompting Method, both of which also use letter boards to facilitate communication.

Its fundamental premise is that most nonspeakers have the cognitive ability to communicate. But their bodies don’t let them.

The philosophy behind Spelling to Communicate isn’t new. A related program, called facilitated communication, has been largely discredited due to evidence that the facilitators were prompting their nonspeaking clients, in part by holding or guiding their hands.

Spelling to Communicate, too, has detractors. The American Speech-Language-Hearing Association (ASHA) recommends against its use, arguing that it “strips people of their human right to independent communication because the technique relies on an aide for prompting,” according to the organization’s website. “This reality raises a host of questions, concerns, and possible dangers.”

Diane Paul, senior director of clinical issues for ASHA, noted that the organization doesn’t discourage the use of letter boards or other communication devices. But she questions why the letter board (or keyboard) needs to be held by the facilitator, and not placed on a table or easel.

“We are trying to promote independent communication where it’s clear that it’s the person doing the communicating — not the possible influence of the person holding the letter board,” she said.

She also noted that there has been very little independent scientific research about the method.

Lisa Zimmerman, who works as an executive with a local health care technology firm, said she is aware of some professional skepticism about the program. Most accredited schools don’t use it. Insurance won’t cover it, she said. So the $85 hourly rate is typically paid out of pocket.

Despite reservations among some in the professional community, Lisa Zimmerman is convinced it works. “This is the only thing that has worked,” she said. “You watch these young adults spelling — I don’t know what else people need.”

S2C comes to Cleveland

LeeAnn DiTomaso, co-owner of Access S2C in Highland Heights, was working as a labor-and-delivery nurse when a friend’s nonverbal son demonstrated his new spelling skills by typing out this message to her: “I think you should do this.”

DiTomaso said, “I never looked back.”

She signed up for seven months of training, completed an internship and opened Access S2C in Highland Heights in 2022.

Her partner, Samantha Paros, meanwhile, was working as an independent caregiver through the Cuyahoga County Board of Developmental Disabilities. The mother of one of her clients, a 16-year-old nonverbal boy, invited her to accompany them to Chicago to learn more about Spelling to Communicate.

“When I saw him spelling, I was blown away,” Paros said. Not long after, she, too, signed up for training.

Paros and DiTomaso, along with two other practitioners and an adaptive personal trainer, work with approximately 60 clients, ranging in age from 5 to 35. The majority are nonspeaking individuals with autism. They also work with a handful of nonverbal clients with Down syndrome.

The program works like this: The practitioner, working one on one with a client, reads several paragraphs about a single topic. Following the reading, they ask their client several questions about the topic — starting with fairly simple fill-in-the-blank type questions, which eventually get more complex.

To answer the questions, the client methodically points at letters on a letter board, held aloft by the practitioner, who reads the letters out loud.

In early sessions, practitioners start with three letter boards, each imprinted with one-third of the alphabet, featuring letters that are 3 inches tall. Individuals with autism typically have poor motor skills, which makes pointing at letters or using a keyboard very challenging. The large letters make the process easier.

Eventually, most clients progress to a single letter board with all 26 letters, plus numbers. Some, including Talia Zimmerman, progress to a keyboard, using a single finger to type words into a computer.

DiTomaso said it works because pointing to a letter board uses gross motor skills, powered by large muscles, and not fine motor skills, which are typically significantly impaired by autism. “Speech is your finest motor skill,” DiTomaso said.

The program also starts from a position of what’s called “presumed competence” — in other words, an assumption that the individual has the ability to communicate.

“You can feel the difference when we say, ‘We know you can do this,'” said DiTomaso. “It’s a big shift in mindset.”

Indeed, when asked recently how she felt the first time someone spoke to her as an adult, Talia, who lives in a group home near her parents in Shaker Heights, replied: “I felt a sense of relief. Someone finally believes in me. I’m free.”

DiTomaso said the program has worked with all of their clients thus far, although some are quicker to adapt to the letter board, can answer more sophisticated questions and are able to more quickly progress to a keyboard.

Paros said she and DiTomaso are absolutely not prompting their clients.

“The biggest proof that we’re not doing something is when they tell us something we don’t know,” said Paros.

The goal for every client, Paros said, is independent communication, initiated by the client.

It should be noted: Talia, as well as most participants in the program, are far more proficient at spelling when they’re working with their professional partners than with parents, siblings and others.

“It’s more emotional with a parent,” said DiTomaso. “It’s more stressful.”

Even so, plenty of parents — including Lisa Zimmerman and Megan Velotta — have gone through the training and are able to communicate with their children one on one.

“If you want to be a good speller with your kid, you have to practice with your kid,” said Velotta.

Talia learns to spell

Rob Zimmerman first took Talia to Access S2C in August 2023. He admits to being skeptical.

“Honestly, I had no idea why I was there,” he said. He thought it was a meeting to discuss the new program. Instead, DiTomaso launched right in, reading a passage about the International Space Station.

“Talia immediately starts answering these questions by spelling out the words,” said Rob, a Cleveland lawyer. “I’m like, ‘Where’s the trick?’ This is like a magic show.”

He came home and told his wife, “There’s something going on here. There’s something to this.”

Over the next 16 months, Talia, who attends sessions at Access S2C twice a week, would progress from using three letter boards to using one letter board to using a keyboard.

At a recent session, she listened to several paragraphs read by Paros titled “The Power of Gratitude,” and then answered numerous questions about the passage.

The first questions were relatively simple, derived from the reading: Name one of the effects of practicing gratitude (“increasing happiness”), what is a synonym for resilience (“strength”), name something that gratitude helps us manage (“difficult emotions”).

Then Paros asked questions with answers that didn’t come from the text: Name a strategy you know that reduces stress (“deep breathing”) and how can gratitude shape your relationships with others (“Showing gratitude toward others will make them appreciate and respect you more.”)

Finally, Paros asked Talia: “What strategies could you use to cultivate gratitude as a daily habit, even during challenging times?”

And Talia responded, using her right index finger to type on the keyboard: “It would be beneficial to wake up every morning and take note of one thing you are grateful for. Carry on with your day and revisit that note before bed. We take too many things in life for granted. Focus more on the positive.”

Both Rob and Lisa say it’s unclear where Talia, who is the oldest of their two daughters, learned how to spell and acquired so much knowledge.

“She’s never picked up a book, never surfed the internet that I’m aware of,” said Lisa.

Rob speculated that perhaps she learned about the Mona Lisa while watching a TV program with him on Italy. “She picks up information in ways that other people don’t,” he said. “I think her brain absorbs information at a greater depth than other people.”

Asked where he envisioned Talia in five years, Rob Zimmerman reflected on his daughter’s future. She has expressed an interest in going to college, he said. He could also see her possibly writing a book.

“I think she has a lot to offer,” he said.

Indeed, later, when asked by Paros whether she had any final thoughts on gratitude, Talia replied: “Thank you for coming today. I am grateful for this new outlet.”

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