An autistic boy regains his voice, one letter at a time

It resembles a child's placemat; the kind you'd find at a family restaurant. Bright red, covered in plastic, with the letters of the alphabet spread across five rows and simple punctuation off to one side, it seems like nothing more than a way to keep a kid occupied during a meal.

But the mat, called a letter board, has allowed a 14-year-old Portland boy to interact with the world in ways that once seemed impossible.

Niko Boskovic creates sounds that are hard to perceive. At times he partially articulates a word that his parents understand. But then he will repeat the word, not for the meaning, but because he likes its rhythm. His face is impassive, giving no clue to what he's thinking or feeling.

Yet to be present when Niko uses the letter board is akin to watching a magician at work. His humanity emerges, letter by letter, sentence by sentence, thought by thought. He swears, tells jokes and smiles. He reveals not only a sharp mind, but a soul, spirit and heart.

***

For most of his life, even Niko's mother wondered what was going on under the surface. He'd seem to be misbehaving, suddenly loud and impulsive, not making eye contact, suddenly darting about the room, touching things, then sitting down again.

It wasn't always that way. He'd been meeting all his developmental milestones, but when he was nearly 3, his ability to use language began slipping away. His parents, Loreta and Bojan Boskovic, speak English, Lithuanian and Serbian. The pediatrician said Niko was just trying to figure out which language to use.

But then Loreta's brother, an anesthesiologist who lives in Seattle, came for a visit. After several days of being around Niko he pulled his sister aside. He was concerned and said he was uncomfortable mentioning it. But he thought something serious was happening to Niko, and he recommended they have the boy evaluated. Doctors diagnosed autism. As the years passed and the Boskovics met other parents of children with the disorder, they discovered that their son had a more severe case than many of his peers.

But in the beginning, they hoped Niko could go to school with other children. Studies convinced them that autistic children who are not mainstreamed can fall behind because they are isolated.

When he turned 5, the Boskovics fought for and won a spot for Niko in a general education kindergarten. But it was a terrible year. The teacher didn't want their son in class, saying she didn't have the energy to deal with the disruptions.

When summer came, his parents, who also have a younger daughter, decided to teach Niko at home, paying to have a behavioral specialist guide them. The family lives near the University of Portland, and they learned students majoring in psychology could receive class credit for working with Niko.

In many ways, the Boskovics were well suited to such an experiment because they're familiar with the services available for people with special needs. Loreta Boskovic works for a Portland nonprofit that helps parents dealing with special education issues; her husband works in a food supplement program with the Department of Human Services.

Through it all they never let go of their dream of assimilating Niko into the larger world. They signed him up for swim lessons but had to have a private teacher because Niko couldn't work with the group. They sent him to day camps, hoping Niko would fit in, find friends and be accepted for who he was.

It was not to be.

"You do that for years and years, and you start to lose faith," Loreta Boskovic said. "You realize it may never happen. "

***

Parents like the Boskovics find themselves in a world within a world. They research the latest findings on autism, scouring the internet to find ideas from experts in the field. They're looking, Loreta Boskovic admitted, for the next hot thing - for the answers to the questions that haunt the children they love.

For her, hope began with a book about Rapid Prompting Method, which was developed by a Texas woman who has an autistic son. Word of the technique spread following a BBC program about the boy, who was evaluated by the National Autistic Society in the UK and determined to be gifted. His mother was then offered a grant to work with autistic children in Los Angeles. That work was featured on "60 Minutes II."

Niko's mom was intrigued.

But still she wondered: Was RPM a parlor trick, something like a Ouija board?

If the assistant touches the child, guiding a finger or arm, for example, it's a now discredited technique known as facilitated communication. Research has shown that the message being communicated in such cases is often from the facilitator, not the child. But some parents desperately want to believe it's working.

"Not being able to communicate with a child is incredibly frustrating," said Melanie Fried-Oken, a certified speech-language pathologist and professor of neurology, pediatrics, biomedical engineering and otolaryngology at Oregon Health & Science University. Her clinical specialty is augmentative and alternative communication.

"Autism is a mystery; there's not one answer," Fried-Oken said.

"Every parent is looking for the solution," she added. "It's like a diet. They all work, but each diet doesn't work for each person. The goal of any program is to find the most effective communication method for that person."

Clinical studies of the letter board technique are limited, but Fried-Oken said research has shown that in cases where the child has no physical contact with the facilitator, RPM can be a viable option.

Niko's mother had read the research. She understood the skepticism regarding facilitated communication. When she learned a letter board workshop was scheduled in Seattle she enrolled herself and Niko in the class, which cost $1,200 for two classes a day over four days. Insurance would cover some of the cost, but the family was willing to pay for the travel and lodging if it meant a chance for her son to broaden his world.

At the seminar, Boskovic watched a speech therapist work with other children.

Then it was Niko's turn.

In the first session, the trainer asked simple questions. Niko spelled them out. His mother, still a bit cynical, kept an eye on the therapist to see if she was prompting Niko, touching him with her foot under the table. She was not.

For the second session, Boskovic sat with other parents in a room, watching the therapist and Niko on a closed-circuit television. The therapist was using a lesson about Washington, D.C., and asked Niko questions like:

What's the name of the river in DC?

Who heads the executive branch?

How long is the National Mall?

Niko correctly answered each one.

The final question was open-ended: If you were to visit Washington, D.C., what would an ideal day look like?  

Niko began to answer, using a finger to move from letter to letter.

One minute elapsed. Two minutes.

His finger still moved from letter to letter.

Three minutes. Four.

He continued moving.

Finally, he stopped.

The trainer read his response: I would love to visit DC one day. I want to meet the Obamas. They seem so nice. We could have lunch maybe. Hope you can join us.

"I witnessed the birth of my son's true voice," his mother said.

Boskovic and the other parents wept. They hugged each other.

When the moment passed, she sat stunned.

Niko's mother was ashamed. She said she didn't think her son had any idea who was president.

"Working in the disability community," she said, "I had thought I was presuming Niko's competence, when in fact, I had not been. I thought I had all the answers."

***

After the Seattle workshop ended, mother and son returned to Portland. Boskovic wrote the school district to say that her boy did not belong in a special education class. She would find him a school that would be a good fit.

Then they focused, together, daily, on the letter board. Her son had a lifetime locked inside of him. Because Niko couldn't type, his mother created a blog for her son and entered his posts.

"I always knew I had a lot to give the world, but no one could hear me," he said in one post. "This was a private hell. How my mom came across the letter board training, I don't know, but I am so thankful." 

As his freshman year approached, Niko made it clear: he wanted to attend a public school. He was set on Trillium Charter School, less than a mile from the Boskovic home.

But to gain admittance Niko first had to get permission from the school district, which sent two evaluators to watch him and his mother using the letter board.

After watching them work on a history lesson, the evaluators left without a word.

A week later, Boskovic received an email from one of them, saying that after observing her and Niko they had to walk around the block to process what they'd seen. The evaluators noted that Niko seemed talented and gifted. They recommended he be admitted to Trillium.

***

The topic closest to me is educational equality for autistics. This must happen. I have been deprived of a meaningful education. The nonsense that has been thought about autistics has to stop. Now. Education is a right. Only those who learn normally are receiving that right. This should not happen - it does. Clearly, I can learn. Teach me! - Excerpt from Niko Boskovic's blog

***

In preparation for Niko's arrival in high school, the district hired Stormy Lovett, a child advocate whose adult son is on the autism spectrum. When her son was growing up she learned about special education laws, and appeared before school boards to push for inclusion.

Lovett recalled how the district explained the job to her: She'd be with Niko in school all day, using the letter board in class, transcribing in a notebook what he spelled out on the mat. "In a sense," she said, "I'd be his voice."

The job, while fascinating, is one of the hardest she's ever had. "This kid is brilliant," she said. "I'm learning along with him. Algebra is hell."

While Lovett learned about Niko's mind, she also discovered the boy's tender heart. In January, someone in her family died. She didn't tell Niko, but the young man knew something was not right.

"He saw I was sad," Lovett said.

"He used the letter board to tell me that he appreciated me so much."

Lovett began to cry in the classroom.

"As much as I nurture him," she said, "he nurtures me."

***

The idea that someone would not know I am autistic is laughable. You only need to be with me for a few seconds to know I am autistic. Those kids with Asperger's are more likely to be able to pass as normal. Those kids have no stupid people staring at them as they act autistic. You have no idea how much I would like for people to stop staring at me in public. - Excerpt from Niko Boskovic's blog

***

School is always more than grades, tests and exams. It's about fitting in, finding friends, having fun. While a small school, Trillium is full of the stereotypes and anxiety that arise naturally whenever teenagers come together. People weren't sure what to make of Niko Boskovic when he arrived.

"He was non-verbal, moaning and flapping," said William Olson, a special education teacher and Niko's case manager. "He'd have disruptive behavior in a class. Like getting up while the teacher was talking and then going to organize all the white board markers."

The first time his schoolmate Kiyah Cleveland saw Niko in the hallway, she tried to speak to him. "He didn't respond," she recalled. "He just made noises. I figured he was developmentally disabled."

She later learned that Niko had autism but had no idea what that meant in terms of his ability to function and to connect.

A few months into the school year, Niko had to prepare an oral presentation. He planned to discuss what he'd learned about apartheid in a class assignment. Then, abruptly, he changed his mind.

"He said he wanted to talk about what it meant to be autistic," his mother said.

Using the letter board, he spelled out his presentation over the course of several evenings. His mother typed it up.

When Niko's turn came, his teacher used a text-to-speech app to read the essay to the audience, which included the school's director, 40 fellow students, teachers and aides. By chance, a state representative happened to be visiting the school.

On that day, Niko Boskovic unveiled himself.

And as the school discovered something about the formerly incomprehensible boy in their midst, they also discovered something about themselves.

Afterword, six students and two teachers asked to be trained on the letter board.

The state representative asked if she could make copies of Niko's presentation and distribute it to other government officials.

***

It can be said that I am a product of a certain place and time. I am roving through my universe like Major Tom, approaching ground control. My aim is to fit in as best I can, without losing my being, my sense of what I am. How successfully I can accomplish this depend on my people around me. - Excerpt from Niko Boskovic's blog

***

Within the school, something changed. Kids looked forward to sitting with Niko and Lovett. Eventually, working with his mom, 11 students learned how to use the letter board. The number increases weekly.

At the same time, Niko began learning how to use an iPad to type and communicate without an assistant. The device will allow him to be more independent as he grows older.

His mother was stunned by her son's thoughts on current events, poetry, and his love of science. His grades were great. He started thinking about going to college. He had friends, including, as he put it, "hot girls" who want to "letter board with me."

"He's surrounded by a team of people who only want to see him succeed and have a whole life," Boskovic said. "As a parent, this is exactly the dream that I had for him all these years."

In March, Kiyah pulled Lovett aside one school day to tell the aide that she wanted to invite Niko to the prom.

"I was a mama bear," Lovett said. "I was quite frank with her. I wanted to know her motivations. Let's say I checked her out."

Kiyah understood.

"It wasn't a pity party," she said. "It wasn't like 'take the autistic kid to prom.' I like him."

She caught herself.

"As friends," she said. "I wanted to go as friends."

To go to the prom would be a public rite of passage for a boy who, for so many years, had been so isolated.

The Friday assembly was routine, one of those blessed breaks from studying. The students gathered in the lunchroom, the tables pushed to one side, everyone forming a circle.

Kiyah stood in the middle.

"I have this question for someone in this room," she said as she paced the floor, holding a pink poster board in both hands. When she turned this way and that, students could read the board: "Prom?" on one line, the words "Yes" and "No" outlined in candy below.

"There is someone in this room and I really want to go to prom with them," she explained. "Because they are an amazing person, and a great friend to me."

She walked the circle.

She stopped in front of Niko.

"Niko," she asked, "will you go to the prom with me?"

Being Niko, he played with the candy outlining the words; he didn't make eye contact with Kiyah. There was no clear answer. So Lovett pulled out the magical red placemat.

The boy spelled out "Y-E-S."

Kiyah and Niko hugged.

Students cheered and clapped.

Later, in a quiet room, he used the letter board to reveal his thoughts:

"It was amazing. I felt loved."

--Tom Hallman Jr.

thallman@oregonian.com; 503 221-8224

If you purchase a product or register for an account through a link on our site, we may receive compensation. By using this site, you consent to our User Agreement and agree that your clicks, interactions, and personal information may be collected, recorded, and/or stored by us and social media and other third-party partners in accordance with our Privacy Policy.