All photos by Erin Ingraffia / Five & Dime Studio Photography
Many parents might not be too happy to hear one of their children call their sibling a nerd.
My neighbors, Greg and Linda Tino, welcomed it. Until recently, their 24 year old son, Gregory, had never been able to take advantage of one of the major benefits of being an older brother: teasing your younger siblings.
Gregory has autism. He’s the oldest of three (he has a sister, Alyssa, and a brother, Ryan). For the first 23 years of his life, he was only able to communicate with his family on a very basic level. To put it simply, it is hard for Gregory to control his body and mind at the same time, which makes speech difficult. Trying to communicate his needs could quickly turn into a frustrating guessing game for his family.
All of that is changing. Over the past year, Gregory has embarked on a remarkable journey that has opened the doors to a new world of communication for him and his family. Spelling to Communicate (S2C) is a communication method that teaches non-speaking people with autism to communicate using a letterboard. (Non-speaking is a term that is applied to people who cannot speak, can speak minimally, or those who can speak but do not speak communicatively.)
I was honored to be welcomed by Gregory and Linda at one of Gregory’s recent S2C sessions at Inside Voice in Springfield, Delaware County. Prior to the session, I had heard through Linda some of the amazing things Gregory was communicating by using the letterboard. His family was learning many new things about him, such as his interest in the Civil War, his fondness of ice hockey, and his feelings about living as a person with autism.
“We did not know about any of this,” Linda told me.
At Inside Voice, a trained professional takes on the role of Communication Partner – what we might normally refer to as a teacher or therapist. Gregory’s Communication Partner is Emily Pinto. Emily is close to Gregory’s age, and she creates her lessons based on material she thinks any person in their 20s would find interesting. For example, when I was there, Emily read Gregory a passage of information about the indie rock band Judah & the Lion. Then Emily played one of the band’s songs, Suit and Tie, on her iPhone. Afterwards, Emily asked Gregory some factual questions about the passage she had just read.
Gregory recalled the information rapidly and accurately, pointing to the letters on the board with no hesitation. Linda and I joked that we couldn’t even remember the details we had just heard Emily read.
Then Emily asked Gregory some open-ended questions.
When asked what inspires him, Gregory’s right index finger moves smoothly across the board, spelling out the following words:
MY FRIENDS AT INSIDE VOICE INSPIRE ME
When asked what advice he would give someone struggling to make a change in life:
I WOULD TELL HIM THERE IS SO MUCH TO BE GAINED FROM TRYING NEW THINGS
When Gregory’s parents first learned about the S2C method, and the success many of its participants were experiencing, they were intrigued but did not want to get their hopes up too high.
“We didn’t want to be deluded,” says Greg, who is a physician.
The family had to travel to Virginia for the initial sessions, as that was the closest available location at the time. Gregory took to the method quickly, and the results were undeniable.
Greg recalled a lesson which was focused on Dr. Seuss, and the rhyming patterns he used in his stories. Elizabeth Vosseller, the Speech-Language Pathologist who developed the S2C method, asked Gregory if he thought he could create a poem using the same style as Dr. Seuss.
With no hesitation, Gregory spelled:
THE WAY TO GO IS EASIER THAN IT APPEARS
I WANT YOU TO KNOW YOU MUST PUT AWAY YOUR FEARS
IS THIS SIMPLE? NO!
YOU CAN EXPECT SOME TEARS
MY BELIEF IN YOU IS STRONG
YOU WILL NOT PROVE ME WRONG
About a year ago, Inside Voice opened its location in Springfield, Delaware County. Colleen and Frank Foti, whose adult son Brian has experienced tremendous success using the method, led the effort to open the center. Brian’s brother, Tom, is now also a communication partner at the center.
There are currently 15 participants at Inside Voice, referred to as spellers, whose ages range from 16 – 57. All are experiencing success using the letterboard to communicate.
Emily attributes the success of spellers using the letterboard to their desire to communicate, more than any other factor.
“This population is determined to show the world what they are made of,” she says.
“This is not just my child,” Linda emphasizes. “We used to think of autistic savants – I now realize they are not the exception.”
It is not an exaggeration to say this method may completely change the way the world views people with autism. It is growing rapidly, with centers using this method now located across the country, including two in Pennsylvania.
As Emily puts it, “I believe it is going to take the world by storm, and hopefully it will reach as many people as it possibly can. This population is going to be able to communicate, and they are going to have a lot to say.”
HAVE AN OPEN PERSPECTIVE
This is the advice Gregory spells when I am visiting his session. He is aware that some people may find this method to be, well, unbelievable.
But what I witnessed was Gregory independently communicating his thoughts. There was no prompting of specific words, or guiding of his finger to certain letters. In the few cases where he pointed to the wrong letter, he immediately pointed to the “X” on the board, signifying that he had made an error. What I witnessed was a young man completely aware of what he was saying.
When Gregory was diagnosed at age 2 ½, his parents were told that he would most likely never talk. It was believed that many children with autism had severe intellectual disabilities, and it was almost impossible for Greg and Linda to tell what Gregory could actually understand.
At that time, one in 10,000 children received an autism diagnosis each year. In 2017, that number was one in 45.
“We decided from the very beginning that we were going to do everything we could to maximize his potential,” says Greg. “That has always been our guiding principle.”
Even with access to the best doctors, therapists, and resources available, many facets of Gregory’s autism have remained mystifying.
But Inside Voice has a motto: Confidence in Competence.
It is clear to me why this is such an important aspect of their core philosophy. On the surface, it does appear that Gregory may not even be listening while you talk to him. He may move around, and talk or sing to himself, giving no indication that he is absorbing what is going on around him.
“We are so used to judging people’s abilities based on what their bodies can do,” says Emily. “What I have learned to do is presume competence despite what I see on the surface.”
Learning to use the letterboard is “not a magic process,” says Emily. The spellers work hard. Starting with a board that contains larger, hollow letters, the spellers start by using a pencil to point to each letter. As S2C’s website explains: speech is a motor function. S2C works to coordinate the motor skill of communication with the cognitive function of language (our ability to think and understand in words). As spellers achieve fluency, they begin using their index finger to point, as well as a “laminate” – the type of letterboard Gregory now uses – which is a laminated piece of paper, slightly smaller than a typical placemat, with the alphabet printed on it. The ultimate goal is for spellers to be able to use a computer to speak.
Gregory now uses the letterboard as part of his daily routines. While Linda explains they still have their everyday challenges, there are basic aspects of life that have been made much easier because of the letterboard. Linda can find out what kind of sandwich he wants to bring for his lunch break at his job (Gregory works with a job coach and works in the bakery department of a local grocery store, as well as stocking shoes at a local department store, and at a veterinarian’s office once a week). For the first time in his life, if Gregory has a headache, he can now let his mother know that.
He can also do other important things, like call his brother a nerd.
Greg laughs, recalling how Gregory teased his younger brother this way through the letterboard. These are the everyday interactions, the joking around, the busting of one another’s chops, that many families take for granted. Not the Tinos.
Another important part of Gregory’s experience at Inside Voice is the community that he has gained. A group of spellers meet each Saturday for a group session. Again, it may appear to an uninformed observer there is no real interaction happening. But, using their letterboards, the group talks about many topics, they share their feelings, and they even play games like UNO together.
Emily asks Gregory to tell me what the group has named themselves.
Gregory smiles and spells: THE GANG
They shared transcripts of a recent group session with me. I laughed when I read how The Gang eggs each other on during the game of UNO, just as any other group of friends would (one speller said I AM GOING TO CRUSH YOU ALL). At the end of the session, The Gang shared some insights about living with autism:
SEE BEYOND MY DIAGNOSIS. I HAVE SO MUCH TO OFFER THE WORLD.
NON-SPEAKING DOES NOT EQUAL NON-THINKING! I AM A GREAT THINKER, AS IT TURNS OUT.
WE USED TO BE VOICELESS BUT NOW WE HAVE A VOICE FOR CHANGE.
CHANGE THE MINDSET.
I AM CAPABLE. I AM SMART. I AM AWARE.
And Gregory’s contribution: I AM HUMAN FIRST, MY AUTISM IS ONLY ONE PART OF MY IDENTITY.
This is the message that the spellers, the Tino family, and the folks at Inside Voice really want to get out there: do not treat people with autism as though they do not understand what is going on around them. Interact with them. Talk to them about the things that any person their age would be interested in. Even if it is not apparent on the outside, they are listening.
We have so much to learn from those who have lived with significant challenges, and my time with Gregory was a humbling reminder of this. During the session I attended, he offered the following advice:
I THINK MY AUTISM HAS GIVEN ME AN APPRECIATION FOR THE SMALL JOYS IN LIFE
THE ADVICE I WOULD GIVE IS TO REMEMBER TO GIVE THANKS FOR THE LITTLE JOYS IN LIFE
Thank you, Gregory, for the joy you bring to life. It certainly is not small.
Check out Inside Voice’s blog Speak Without a Voice to read more thoughts from the spellers.