At 18 months old, Jocelyn Cutie was diagnosed with autism. That was over 30 years ago.
In terms of what was known about the disorder, it might have been 300 years.
Much has been learned since then, says Jocelyn’s father Jim, a longtime Westport resident.
But what he and his wife Chris have learned — about autism, and what was locked inside Jocelyn for nearly her entire life — is breathtaking.
Jocelyn’s condition — apraxia — involves motor function, not cognition.
“She understands every word you’re saying,” Jim explains. “She just can’t respond verbally, vocally.”
Jocelyn Cutie (right) and her parents, at a party.
Until 2 years ago, Jim and Chris had no idea what was going on in their daughter’s brain.
But when she began to use a spelling board to communicate at the Mouth to Hand Learning Center in Mount Kisco, New York, her world has joined theirs.
In that short span of time Jocelyn has taken college-level poetry, literature and biology classes. She started a blog.
And she has become an advocate, speaking on panels about the use of spelling to communicate. Her words are insightful, smart — “even sarcastic,” Jim says.
Jocelyn’s story is not unique. Jim and Chris now know more than 50 spellers.
“They suffer from motor impairment, not language skill impairment,” Jim says.
“Their bodies are so greatly dis-regulated that they cannot physically execute what their cognitive brains tell them to do. Speech is physical; language is cognitive.”
Jocelyn Cutie (center) using a spelling board, with Mouth to Hand director Judy Chinitz (left) and her mother Chris.
Jocelyn’s story is similar to Wynston Browne’s, another Westporter. “06880” has reported regularly on his journey, from a non-speaker “presumed incompetent” to a teenager who can multiply three-digit numbers in his head, understands Mandarin, stars in a movie, and wants to become a neuroscientist. (Click here for several stories about Wynston.)
Jim knows there are spelling skeptics. He and his wife had a number of false starts and met some “phonies,” during their 30-year quest to help their daughter.
They even waited a year, after friends told them about spelling devices — simple devices with letters arranged alphabetically, not like a keyboard — before agreeing to give it a try. (Eye commands are used, because apraxia makes motor tasks difficult. The brain knows what to do, but the body cannot execute those commands.)
Mouth to Hand founder/director Judy Chinitz showed Jocelyn 3 boards (fewer letters makes eye tracking easier than only one), then read her a story about Stephen Hawking and disabilities. As Judy asked questions, Jocelyn answered.
“Chris and I wondered, ‘how did she know all this stuff?'” Jim recalls. “She’d been listening all those years.”
Jocelyn immediately flourished. As she poured out her thoughts — via the letter board — she joined Mouth to Hand’s blogging community.
In “Then and Now,” she wrote:
Before spelling there was nothing. There sometimes was the slightest glimmer of light in whatever hell I inhabited. The light was mainly emanated by my parents.
But the world was mainly dark: I had no way of telling them that I was in this body. I had no means of communication.
But I was totally one of the lucky ones. Had Mom and Dad not taken me to se Judy, the nightmare would never have ended. I am getting so teary now, just thinking about then and now.
Jocelyn Cutie, spelling with her father Jim.
On her blog, Jocelyn expressed herself eloquently. Describing her “self-improvement kick,” she wrote: “I am really going to try to become more of what I should have been if autism hadn’t happened. I would have been a great student and I would have been popular. Having the opportunity to do both is what M2H is all about.”
She cited “Hallmark Moments”: having friends, and thinking about life before and after Mouth to Hand.
Jocelyn with her mother. Chris is an art instructor at Mouth to Hand, teaching art history, painting, printing and photography.
She has become particularly close to another non-speaker, Judy’s 32-year-old son Alex. She wrote about inviting him and Judy to dinner. (“I will cook. Mom can be my sous chef.”)
She also went to Alex’s bar mitzvah.
I loved that service more than I can express. Everything about it was beautiful, from the singing to Alex reading Hebrew prayers and the Torah, to Judy chanting what he typed.
The rabbis were amazing, and my part in the service was lovely. Seeing Alex up on the stage for 2 hours was happiness itself; he awed all of us.
And, she wrote:
Maybe miracles can happen.
On Saturday I sat on a panel of nonspeakers at the M2H ribbon cutting ceremony. I am still riding the high. A year or so ago I couldn’t even talk. Now I am sitting on public panels, talking in front of dozens of people. I got to meet the mayor of Mount Kisco.
Can you believe this is the same Joss Cutie?
I am still in shock. Definitely, letting me talk on that panel was the greatest thing to ever happen to me.
The whole event was great. I am living the dream these days.
Jocelyn uses her spelling board, while speaking on a panel.
Jocelyn spends 3 days a week at the center. (She wishes she could go even more.) She takes poetry writing, songwriting and dance classes.
She’s in a book club there too (they just finished discussing a Robert Heinlein novel).
Looking back at Jocelyn’s previous life — including her years at Giant Steps in Fairfield, which she attended until she was 21 — Jim says, “Chris and I get pretty emotional. We can’t get certain things back. We talked ‘child talk’ to her even when she was an adult, and she called us out on it.
“Jocelyn is taking 8 serious courses. She’s talking about college courses.
“For us, we’re trying to do what she wants. She’s really a different person. Obviously, we have regrets. But we’re so glad we found Mouth to Hand. She’s harping on the ‘now,’ not the ‘then.’ And so are we.”
Jocelyn is also looking ahead. With a voice that rings out now — after 30 years of silence — she is determined to advocate for those who cannot yet speak.
(“06880” is “where Westport meets the world” — in all its complexity and wonder. If you appreciate stories like this, please click here to support our work. Thank you!)
The film was inspired by Wynston Browne. The story of the non-speaking autistic Staples junior — for years believed to be developmentally disabled, now using a keyboard to stun everyone with his remarkable intelligence — has inspired people all over town.
