Judy Chinitz’ son Alex, 32, has non-speaking autism. At age 25 he was in a daycare program where he mostly stared out the window. As far as she knew, Chinitz said, “his functioning level was that of a preschooler.”
Then a friend told Chinitz that her non-speaking daughter, Elizabeth Bonker, had started communicating by pointing to letters on a placemat-sized alphabet board. She urged Chinitz to try it with Alex.
Chinitz took Alex to a communication specialist who read him a short article about the moon, which said its surface is covered with dirt and dust. The specialist held up a letterboard and asked him to point to the letters spelling one thing the moon is covered with.
With great difficulty, Alex pointed to “D.” Then “S.” Then “T.”
Wait — what?
Back home, Chinitz frantically tried to get Alex to repeat this. But many people with autism have dyspraxia of the body — the body doesn’t do what the mind wants it to.
Mother and son practiced for three months. Then one day, Chinitz asked, simply, “What is your name?”
As she held the letterboard he pointed to “ALEX.”
“What is your brother’s name?”
“LIAM.” At this point, Chinitz says, “I yelled to my mom, ‘START FILMING!’ ”
As grandma recorded, Chinitz asked Alex increasingly hard questions, until finally, “What celestial body has infinite gravity?”
“BLACKHOLE.”
Says Chinitz, “My life completely changed in that moment.”
It was not unlike the moment deaf and blind Helen Keller first spelled “WATER” into Anne Sullivan’s hand using sign language.
It turns out Alex had been able to read since toddlerhood, thanks to his mom reading aloud to him. He’d also been watching documentaries and listening to the conversations and media around him.
Once Chinitz helped Alex get good at communicating, she started teaching another child. Then another. Five years ago she opened the Mouth to Hand Learning Center in Mount Kisco that now has 100 students.
Students who may soon be silenced by a bill in Albany that seems to suspect this is all phony.
Please note: “Spelling” — pointing to letters — is not to be confused with the “facilitated communication,” technique from the 1990s where practitioners held the autistic kids’ hands as they typed. That fell out of favor because it looked too easy to fake, like a Ouija board.
Current techniques have evolved based on that criticism so it’s obvious that the communicator is the one doing the talking. People now are clearly pointing on their own, while a “communication partner” holds the board up to their field of vision, at least for most spellers. (Some eventually graduate to typing on keyboards on their own.)
This assistance has engendered skepticism. In fact, the American Speech-Language-Hearing Association has come out against this method, because it “strips people of their human right to independent communication because the technique relies on an aide.”
I was skeptical, too — until I watched spellers at three different centers, including Mouth to Hand.
While the “communication partner” doesn’t touch the speller, they do sometimes offer encouragement — “Keep going!” And if they see the speller flagging, they sometimes take the board away for a second and say, “Focus.”
Why would the speller need any of this? Regulation. It is so hard for people with autism to control their bodies that the partner acts as something like a coach, teacher, and emotional support system.
At Mouth to Hand I watched half a dozen spellers and it was clear they — not the letterboard-holder — were doing the communicating. They were funny and personable. They complained about other therapies that treated them like babies. They rued the years no one knew that they were smart, or even listening. That’s the hardest thing to absorb: their autism isn’t a cognitive problem. It’s a motor skills problem.
I asked one nonspeaker, Anthony, 22, what would he say to people who don’t trust this new technique — including some in Albany?
Anthony pointed to the letters “SEEING IS BELIEVING,” as I videotaped with my phone. (I posted it on Instagram here.)
But there is trouble ahead for New York’s spellers. If Albany legislators don’t pass a law guaranteeing they can use their preferred communication method in places like group homes and daycare programs, they may go back to staring out the window.
The law (A7363c) passed the state Assembly last June. It was sponsored by Assemblyman Angelo Santabarbara who has an autistic son. Then it went to the Senate, where it languished for almost a year.
When S7792B was finally set for a vote about a month ago, new amendments were added at the last minute. These said that to be approved, any communication method had to be validated and autonomous.
This would rule out communicating with a letterboard held by someone.
“These amendments make things worse than they are right now,” said Santabarbara. He believes they were suggested by the state Office for People With Developmental Disabilities, because “they just like to keep things the way they are.”
The OPWDD responded by email saying it does not support using a letterboard held by a communication partner. It wants nonspeakers “to communicate freely and without coercion.” It seems to suspect spellers (and the rest of us) are being manipulated, or worse.
State Sen. Patricia Fahy, who sponsored the bill in the Senate and chairs the Disabilities Committee, added those amendments. She did not respond to requests for comment. Nor did she attend the Autism Action Day in Albany a few weeks ago.
The spellers and family members who did begged the Legislature to kill the amendments and pass the bill. Hundreds of other supporters have been demanding the same, including Margot Keller and her daughter Brooks Hamilton, who wrote an open letter to Fahy and the Disabilities Committee.
“Our aunt, Helen Keller, did not arrive at communication independently,” they wrote. “She relied profoundly on her teacher and communication partner, Anne Sullivan.”
Without Sullivan’s help, “the world may never have heard Helen Keller’s voice.”
Without Albany’s help, thousands of New Yorkers may never be heard either.
Skenazy is founder of the Free-Range Kids movement.