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CALIFORNIA
In the ‘silent prison’ of autism, Ido Kedar speaks
out
The high school student’s ‘Ido in Autismland’ is part memoir and part protest,
a compelling message to educators on how to teach people such as him.
By THOMAS CURWEN
DEC. 21, 2013
8 AM
In the ‘silent prison’ of
autism, Ido speaks out
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Ido Kedar takes a breather while working out at a local high school.
Kedar doesn’t play sports, but his parents try to keep him in shape
by having him work out with a fitness instructor. More photos
The high school student’s ‘Ido in Autismland’ is part
memoir and part protest, a compelling message to
educators on how to teach people such as him.
By Thomas Curwen
Photography and video by Genaro Molina
Dec. 21, 2013
I t-h-i-n-k
Ido Kedar sits at the dining room table of his West Hills home. He
fidgets in his chair, slouched over an iPad, typing. He hunts down
each letter. Seconds pass between the connections.
A-u-t-i-s-m-l-a-n-d
Advertisement
He coined the word, his twist on Alice’s Wonderland.
“C’mon,” says his mother, Tracy. “Sit up and just finish it, Ido. Let’s
go.”
He touches a few more keys, and then, with a slight robotic twang,
the iPad reads the words he cannot speak.
I think Autismland is a surreal place.
For most of his life, Ido has listened to educators and experts
explain what’s wrong with him. Now he wants to tell them that they
had it all wrong.
Last year, at the age of 16, he published “Ido in Autismland.” The
book — part memoir, part protest — has made him a celebrity in the
autism world, a young activist eager to defy popular assumptions
about a disorder that is often associated with mental deficiency.
He hopes that the world will one day recognize the intelligence that
lies behind the walls of his “silent prison,” behind the impulsivity
and lack of self-control.
I want people to know that I have an intact mind.
Yet Ido gets nervous easily and likes to retreat to his room or to a
cooking program on television. At one point, after answering a few
questions, he steps outside to pace beside the family swimming pool.
He plucks a rose and puts its petals into his mouth.
Ido Kedar wears sound-blocking headphones because of his
heightened sensitivity to sound. “My dogs bark like shotguns. The
gardeners mow with tanks and blow leaves with hurricanes,” he
wrote. More photos
During summer, when temperatures in the San Fernando Valley
push into triple digits, Ido’s refrain is “osha, osha,” and his father,
Sharon, drives him over the mountains to the ocean.
Approaching Zuma Beach on a Sunday afternoon in September,
Sharon repeats the rules: “Follow my instructions, and stay behind
me at all times.”
“Eee, num, num, num,” Ido says with a laugh.
“You’re happy now that we’re going to the beach,” Sharon says.
They drop their towels in the sand by Tower 12. Ido waves his arms
and grabs Sharon’s arm as they march into the waves.
Autism, Ido says, is like being on LSD, something he learned about
in health class, and his experience in the world can be at times
terrifying and overwhelming. Sensory minutiae that in other people
are filtered and organized, collide indiscriminately in his brain.
Feelings of anger, sadness, even silliness can escalate, and he can
have difficulty calming down.
The water surges around them. The sound of the waves and sea
gulls, the voices and screams of children and families, the surf,
rising and falling, its ceaseless crescendo and diminuendo, rushes at
Ido as a terrible cacophony like the buzzing of mosquitoes, loud and
inescapable.
As unsettling and as unpredictable as autism is, it also brings a
strange pleasure to Ido’s life. Glints of sunshine, pockets of shade
mesmerize him, and objects in motion reveal traces of acceleration,
like stop-motion photography.
He grabs a strand of kelp, strips off the leaves and begins whipping
it over and over in an S-pattern against the dissolving foam. Waves
rise and fall against him, but he stays focused on the movement that
he’s created against the water’s surface.
Breaking the silence
‘Autismland’
Ido Kedar, 17, has emerged as an essayist and spokesman.
Like many of his repetitive behaviors — arm-flapping, fingerdancing, string-twirling — this gesture, referred to in the autistic
community as a “stim” (for self-stimulation), enhances sensations
around him and has a narcotic effect.
They take me to a sensory experience that is pretty intoxicating. I
don’t get lightheaded, but I can get so absorbed in a stim I sort of
vanish from my personhood.
A half-hour later, Ido and Sharon are heading home. Ido cues the
“Nutcracker Suite” on the CD player. Tchaikovsky is one of his
favorite composers. Flutes and oboes, trumpets and tuba, triangle,
celesta and glockenspiel begin to weave their complex melody.
Music is a beautiful gift. I see pretty images of moving light.
Different composers have different patterns.
Sharon and Ido hold hands as they crawl through traffic.
Ido has a speech to write. In almost two weeks, he will address
graduates from the department of special education at Cal State
Northridge. The invitation came from a professor who calls “Ido in
Autismland” one of the most profound books he’s read.
As committed as Ido is to explaining his experience with autism, he
is equally passionate about how to teach autistic children. Some of
his worst teachers have become his best teachers for what not to do,
and he thinks he knows why.
They have to let go of their love of power.
Sitting in the living room, Tracy, Sharon and a friend, Adrienne
Johnston, are helping Ido organize his thoughts. He is
communicating with his letter board, a laminated piece of cardboard
with the alphabet printed on it. His right hand dances among the
letters, a blur of quick expression, far quicker than his iPad.
Johnston, who will be speaking at Northridge as well, works for the
Los Angeles Unified School District and helps students with
disabilities navigate from special education to general education
classes. She met Ido in middle school and continues to help him at
Canoga Park High School.
“When I first graduated, I thought I knew it all,” she says, thinking
about new teachers. “We need to remind them that their attitudes
must be open.”
The special education idea is to maintain and contain.
Ido Kedar spends a quiet moment to himself in the schoolyard
during lunchtime at Canoga Park High School. “I’m a strange
mixture. I am smart as a mind and dumb as a body. I can think of
insights and my body ignores them,” he says. More photos
“What should they do, sweetie?” his mother asks.
I think they should all be kept mute one day and sit in a low autism
class as a student, listening to baby talk and the weather.
Tracy and her husband laugh. Years of frustration and guilt have
turned to pride. She’s 53 and works as a school social worker and
private therapist, and he’s 50, a geophysicist at the Jet Propulsion
Laboratory.
They recall one administrator at a former school who insisted that
Ido wasn’t doing the classroom work, that his aide was answering
the questions.
It’s a familiar and painful memory. His dependency on others is
considered evidence of his inability to think for himself. After one of
Ido’s presentations, Tracy was approached by an older man who
asked if Ido really understood everything said to him.
“Eeeee, eeeee,” Ido interrupts.
“He was a bully,” Tracy says, remembering the administrator.
He told my teachers that I was not understanding the work. He
would stand behind me taking notes on my behavior. He told me
that I would never graduate.
As an infant, Ido seemed to hit all his developmental benchmarks.
He even began to talk at an early age. But somewhere between 2 and
3, he suddenly felt as if he were standing at a divide in a road. Try as
he might to join other children, he couldn’t.
Tracy remembers the day she got the phone call from the preschool.
I can get so absorbed in a stim I sort of vanish from my
personhood.”
— Ido Kedar in ‘Autismland’
Share this quote
“We have our concerns,” the administrator said.
Tracy and Sharon took Ido to a psychiatrist, who made the diagnosis
in 20 minutes.
Ido was enrolled in Applied Behavior Analysis, the most popular and
recognized treatment for the disorder.
For two years, aides set up school in his home and ran through daily
drills to teach motor and social skills, such as how to eat with good
manners and wash, how to recognize words and emotions, how to
wave goodbye and point. Rewards came in the form of tortilla chips,
cookies and tickles.
The lessons frustrated him, and the aides seemed unaware of his
discomfort. They wanted, for instance, to teach him to maintain eye
contact, but light reflecting off eyes unsettles him, and because he
was unable to speak or coordinate his hands to indicate
comprehension, the drills were repeated.
“Very stimmy today,” wrote one aide in a log dated 2003, when Ido
was 6. “Lots of jumping around the room @ the beginning of the
session. Last 1/2 hour seemed tired & cranky. High frustration.”
As other children progressed with ABA — one even going into
kindergarten — Ido fell more deeply into Autismland.
I felt kind of terrified when I was a kid that my life would be this
way forever.
Once Ido started school, Tracy worked with him at home. She
helped him hold a pen, and with her hand over his, she guided him
through his letters.
He always loved letters. As a toddler, he would clap at the credit rolls
on television and sit by the pool watching his grandfather paint the
alphabet on the pavement. Ido enjoyed watching the patterns
evaporate in the sun. Each letter, he says, has a unique personality;
his favorite is H.
One day before his seventh birthday, Tracy and Ido were preparing
invitations.
“Please come to my party,” they wrote, and when she asked him for
the name of a friend, she felt him moving the pen. The lines were
wobbly; his coordination was poor, but he was writing the letters
himself.
After years of silence, Ido and Tracy had found a way to talk to each
other.
Ido Kedar, second from left, answers a question with the use of a
letter board held by aide Anna Page. He prefers the letter board,
inscribed with the alphabet, over an iPad. More photos
When Ido was younger, he hid in a closet when visitors dropped by.
On the eve of his 17th birthday in May, he is darting from the dining
room into the kitchen. Family and friends have begun to arrive.
Tracy lights two candles for Sabbath and says a silent prayer. She
turns to her son. “Happy birthday, Ido,” she says. “Here’s to a
wonderful year, and may you continue to be a blessing.”
She kisses his forehead. Sharon drinks a little wine from a small
silver cup they received when Ido was born.
After dinner, Ido twirls an upside-down plastic cup on his knife,
hypnotized by the motion, and asks to be excused. He settles on the
sofa to watch “Alice in Wonderland.”
Later, over marzipan and white chocolate cake, everyone gathers to
sing “Happy Birthday.” But at the first words, Ido cups his hands
over his ears. Soon they are whispering the song.
Sensitive to sound, he often wears his “bulletproof” headphones, the
type that shooters wear at firing ranges.
My dogs bark like shotguns. The gardeners mow with tanks and
blow leaves with hurricanes.
Ido says he can also see auras, emanations of color around people
that help him gauge their temperaments.
His mother is blue, his sister is green and his father is greenishyellow. Purple, he says, is the most open-minded color, brown the
most closed off.
Brown is the color of my ABA teachers.
He was pulled out of the ABA program when he was 7 and began
working with a woman who had been successful teaching her
autistic son.
Soma Mukhopadhyay met Ido at her apartment in Hollywood for an
hour each Sunday. The lessons were not dependent on drills or
rewards.
Soma was different from any other teacher because I knew
immediately that she saw I was smart.
During one session, after fighting with Mukhopadhyay, he threw
himself on the floor, crying. Tracy apologized.
“It isn’t a tantrum,” Mukhopadhyay said. “It is sorrow.”
Ido Kedar, with his mother Tracy, writes on his iPad. “I felt kind of
terrified when I was a kid that my life would be this way forever,” he
once wrote. More photos
Ido takes his favorite desk in a corner of Amber Tesh’s classroom.
Tesh is reading a scene from “To Kill a Mockingbird.”
Ido has just come in from lunch, where he stimmed in a secluded
corner of the crowded schoolyard out of the way of other students
playing handball, making out or texting.
I’m a strange mixture. I am smart as a mind and dumb as a body. I
can think of insights and my body ignores them.
This afternoon Tom Robinson is on trial, and Atticus is questioning
Mayella in court.
“What do we know about Mayella?” Tesh asks.
“She’s dumb,” says one of the students.
“Yes, but what else?”
In the silence, Ido leans forward, rocking back and forth, smiling
and laughing slightly to himself as if someone has just told him a
joke.
He begins to point to the letter board his aide is holding in front of
him.
She likes Tom.
“That’s right,” says Tesh, who is proud of Ido’s work. In the
California High School Exit Exam, he scored 443 out of 450, missing
one answer.
Of all his classes, Ido likes his honors English class most, especially
because Tesh treats him like other students.
He knows that his behavior is unusual. He envies his sister, and
wishes he had her independence and friends. Unlike some autism
advocates who champion the disorder as an emblem of diversity, Ido
would prefer to be typical.
Can I visit Autismland instead of living here?
Ido Kedar sits with former teacher and friend Adrienne Johnston,
right, along with his family after speaking at Cal State Northridge.
More photos
The Cal State Northridge campus is crowded with graduates. Tracy,
Sharon, Ido and his sister, Liat, walk toward the open square where
the department of special education will gather for its
commencement. Pachelbel’s Canon plays in the distance; Ido adjusts
his headphones.
As a guest speaker, he is given a black gown. Tracy helps him put it
on, and they take their seats.
He’s grown accustomed to public appearances. He says he only gets
embarrassed when people gush over him.
It drives me crazy when people do that. My situation may be new
and tragic to them, but it is my life.
Tracy places her hand on Ido’s shoulder. She hopes there isn’t too
much stimulation for him today. After he got home from school, she
had him walk for 20 minutes on the treadmill and spend 10 minutes
on the rowing machine. She also gave him a small dose of Ativan to
ease his anxiety.
Ivor Weiner, a special education professor, introduces Ido. He tells
the audience how they met in January at an autism conference.
“Ido’s words,” he tells the graduates, “stopped me in my tracks. I
admit it, for a long time, whenever families had children with
significant challenges, my expectations for these individuals would
often be mediocre. After all, how could these individuals contribute
to society?”
Tracy stands and guides Ido by the hand to the podium. Sharon
connects the iPad to the outdoor speakers.
It is hard to be a teacher of kids who don’t communicate. The kids
don’t have writing, or gestures, or speech, or facial expressions, but
that doesn’t mean they can’t think.
As his words are broadcast, Ido turns away from the audience. He
curls his arms overhead, stretches and yawns.
Contact the reporter
Follow Thomas Curwen (@tcurwen) on Twitter
Follow @latgreatreads on Twitter
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Thomas Curwen
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Thomas Curwen is an award-winning staff writer for the Los Angeles
Times, where he has worked as editor of the Outdoors section,
deputy editor of the Book Review and an editor at large for features.
He was part of the team of Times reporters who won a Pulitzer for
their work covering the 2015 terrorist attack in San Bernardino, and
in 2008 he was a finalist for a Pulitzer Prize for his story about a
father and daughter who were attacked by a grizzly bear in Montana.
He has received a Rosalynn Carter Fellowship for mental health
journalism and was honored by the Academy of American Poets.
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