themcglynn.com

05 Jan

Teen Locked in Autistic Body Finds Inner Voice

Her finger hovers over the keyboard, sometimes for
hours, before she painstakingly begins to type:

“You don’t know what it feels like to be me, when you
can’t sit still because your legs feel like they are on
fire or it feels like a hundred ants are crawling up
your arms.”

Something extraordinary happened to Carly
Fleischmann, a severely autistic 14-year-old who,
unable to speak, was once written off as mentally
deficient.

“It is hard to be autistic because no one understands
me. People look at me and assume I am dumb because
I can’t speak.”

There are experts and skeptics who believe that
nonverbal people like Carly are incapable of thinking
or writing.

“I think people get a lot of their information from so-
called experts but if a horse is sick, you don’t ask a
fish what’s wrong with the horse. You go right to the
horse’s mouth.”

Her words may never have been found if not for the
relentless determination of her family, who never gave
up on her. Carly’s story is how one child found her
way out of the dense forest that is autism, and how
her experience may unlock the mysteries of this
baffling disorder.

Diagnosed with Autism, Carly Lost in Own World

Born in Toronto, Carly was 2 years old when it
became clear she wasn’t keeping up with her twin
sister, Taryn. When her parents, Arthur and Tammy
Fleischmann, learned the diagnosis was autism they
expected the worst — that one of their twins would
never achieve milestones most take for granted.

“When you’re told your child is going to be

developmentally delayed, that they might achieve the
developmental level of a 6-year-old, it’s like being
kicked in the gut,” Carly’s father recalls. “And so for
us, we have expectations of one child who’s going to
grow up and be independent and accomplish things
that she wants in life, and one child, a big mystery,
what’s going to become of her.”

In the beginning, Carly’s delays prevented her from
walking and sitting up, but as she grew, it became
painfully clear that Carly couldn’t speak. Like most
autistic children, she was lost in her own world,
perpetually swimming under water.

Experts told the Fleischmanns that early intervention
was critical, and since Carly was 3, her therapy has
been intensive and unrelenting, sometimes working
with three to four different therapists daily for up to
60 hours each week. Her team, nicknamed Carly Inc., w
ould constantly change therapies that weren’t
working and streamline the ones that did. Carly made
small gains, but nothing that ever seemed like real
progress.

“When you look in Carly’s eyes, you can see an innate
intelligence. So we never gave up,” her father recalls.

But if there was intelligence, Carly’s ceaseless
rocking, flailing arms and tantrums hid any trace of it.

By ALAN B. GOLDBERG and LAUREN PUTRINO
Teen Locked in Autistic Body Finds Inner Voice
Unable to Speak or Connect to the World Until Age 11,
Carly Fleishman Types: ‘I Am Autistic But That Is Not Who I Am’
 
Worse, she couldn’t speak, not one word.

Intensive Therapy Attempts to Find Way for Carly to
Communicate

For many years, Nicole Walton-Allen, a clinical
psychologist, led Carly’s therapy program.

“Her profile was that of a child who was severely
autistic and more than likely moderate mentally
retarded,” Walton-Allen told “20/20.” “I did not have
any expectation that she would have a fluent form of
communication. She was getting up and running
around. Her hands were constantly in motion,
flapping. She was drooling.”

Raising a child like Carly in a house with two other
children wasn’t easy. Both parents were trying to make
a living and keep the house going. Many nights Carly
only slept four hours and, unable to control herself,
still displayed disruptive behaviors. The family felt
lost. Friends had suggested that they place Carly in a
group home or institution, an idea her parents
rejected.

“A 7-year-old in a group home, it’s horrifying. The
thought of that is horrifying, giving up your child. I
could never do it. Never do it. How can you give up
your kid? No, no. You just keep persevering, you
know,” an emotional father explained.

Most frustrating was Carly’s inability to speak. Her
therapists desperately needed to find some way for
Carly to communicate her thoughts. Thousands of
hours over months and years passed, and Carly’s
progress was excruciatingly slow.

Breakthrough: Carly Emerges from Silent, Secret
World

Therapists introduced picture symbols that would
allow her to communicate her needs. For example, if
Carly wanted chips, she would point to the picture of
chips.

But then one day, three years ago, when Carly was 11,
she was working with two of her therapists when she
started to feel sick. Unable to communicate what she
needed, she ran to a computer and began to type for
the first time.

First she typed the word “H-U-R-T” and then “H-E-L-
P” and then she threw up. Her therapists were
shocked: They had never specifically taught her those
words, and they wondered where she had learned
them.

Carly’s typing showed them that there was a lot more
going on inside her head than they had thought. For

 
the first time she was able to communicate
independently. After nine years of intensive therapy,
and not much to show for it, Carly was finally
emerging out of her silent, secret world.

When first told of Carly’s breakthrough, the family
didn’t believe it. They had every right to be skeptical.
Carly refused to repeat the exercise for her parents
and her other therapists.

Because nobody apart from two people had ever seen
it, the skeptics were desperate to see proof. Going
forward, the plan was to use tough love to get Carly
to type. If she wanted something, she had to type for
it. And it worked. Several months later, Carly started
to type, and what came through her finger, typing one
letter at a time, with fluency that no one could believe,
was simply remarkable.

Carly: “I am autistic but that is not who I am. Take time
to know me, before you judge me. I am cute, funny
and like to have fun.”

Typing Unlocks Mystery Behind Her Behavior: ‘I Want
Something that Will Put Out the Fire’

Through her torrent of words, Carly began to unravel
some of the mysteries behind her often wild behavior,
like banging her head.

Carly:”Because if I don’t it feels like my body is going
to explode. It’s just like when you shake a can of
coke. If I could stop it I would but it is not like
turning a switch off, it does not work that way. I know
what is right and wrong but it’s like I have a fight with
my brain over it.”

Carly started to realize that by communicating she
had power over her environment, and she wasn’t shy
about expressing her desires and frustrations. 

Carly: “I want to be able to go to school with normal
kids but not have them getting upset or scarred if I hit
a table or scream. I want to be able to read a book by
myself without having to tell myself to sit still. I want
something that will put out the fire.”

For the first time, Carly was able to have
conversations with her parents, even instant-
messaging her father at his office. Her family stopped
looking at her as a disabled person and instead met
the funny, sassy, intelligent girl that had been
trapped inside. They also said they were “horrified”
that for most of her life they spoke in front of her as if
she wasn’t there.

Carly: “I want people to know that no one is telling me
what to say and I don’t have a hand up my butt like a
puppet.”

Despite Progress, Constant Care Still Needed

For all her progress communicating, Carly still needs
constant supervision. A family member or aide is
always at her side, directing her through simple daily
tasks like brushing her teeth, fixing her hair, even
eating. Nothing is easy. But like most teens, Carly
likes music, boys, clothing and of course going to
the mall.

Carly has been very clear that she sees herself as a
normal child locked in a body that she has little to no
control over. So in public, everything has to be
broken down and planned to control her impulses. In
the past she has wandered off, even stolen goods.

Side by side with her twin sister, Taryn, it would be
easy to dismiss Carly as intellectually challenged.
That is, until you ask her a question. For instance,
Why do autistic kids cover their ears, flap their hands,
hum and rock?

Carly: “It’s a way for us to drown out all sensory input
that over loads us all at once. We create output to
block out input.”

Carly’s brain, unlike most of ours, is overwhelmed by
the senses of sight, sound, taste, smell and touch.
She calls it audio filtering.

Carly:”Our brains are wired differently. We take in
many sounds and conversations at once. I take over a
thousand pictures of a person’s face when I look at
them. That’s why we have a hard time looking at
people. I have learnt how to filter through some of the
mess.”

To help keep Carly calm — and keep her impulses in

 
check — she listens to music, swims and even does
yoga, which has helped with her breathing and
posture.

Carly’s family and therapists emphasize that no one is
physically directing her to type, as some skeptics,
they claim, have suggested.

“This isn’t some spontaneous event,” Carly’s mother,
Tammy, insists. “This is entirely Carly. No one is
touching Carly’s fingers, no one is moving anything,
no one is prompting her or telepathically insinuating
what she should type.”

Dr. Nicole Walton-Allen, an early skeptic, concedes:
“In retrospect, it is quite clear that Carly obviously
had skills that we were not aware of and she needed a
vehicle to express herself.”

Sense of Humor, Awareness Baffle Doctors

One of the things that makes Carly so unique is her
tremendous sense of humor. For instance, this
exchange with her therapist:

Barb: “How cute are you?”
Carly:”I’m so cute blind people stop and stare.”
Her brother Matthew is also a favorite target.
Carly: “Matthew smells so bad skunks run and hide.”
Besides her obvious spunk and tenacity, Carly is
empathetic and recognizes the love and sacrifice her
family has made for her, something she conveyed to
her father on his birthday.

Carly:”Dear Dad, I love when you read to me. And I
love that you believe in me. I know I am not the
easiest kid in the world. However you are always there
for me holding my hand and picking me up. I love
you.” 

“I’ll go through many sleepless nights to hear that. I’ll
spend every penny we have to hear that,” Fleischmann
says.

He also notes that Carly’s breakthrough was the result
of thousands of dollars spent on years of intensive
therapy. It’s the kind of money most families
unfortunately could never afford to spend on their
autistic children.

A year after we first met Carly, she is happier, calmer
and more independent. She also has her own internet
blog and twitters regularly, answering questions from
people all over North America about her experience
with autism.

And Carly continues to mesmerize people by trying
her hand — that is, her finger — at writing a novel
called “The Elephant Princess.”

But experts we spoke to said Carly’s abilities are
extremely rare and that her case should not raise
false hope.

The Fleischmanns know that Carly is not out of the
woods. She will likely require considerable support
for the rest of her life. But Carly knows that she now
has a voice that can help other kids. She looks at
herself as someone who can make a mark on the
world.

Carly:”I think the only thing I can say is don’t give up.
Your inner voice will find its way out. Mine did.”

For more information on Carly, you can visit her blog,
or follow her on Twitter.

Selection from Carly’s Forthcoming Novel “The
Elephant Princess”:

“I want you to close your eyes and imagine a girl all
alone in the middle of the jungle. All she can hear are
the sounds of the animals. But what she does not
know is that the sounds aren’t just random sounds. In
fact, the animals are talking to each other. People
think that a lion’s roar is its way to scare you. But let
me tell you from experience that a roar is not just a
roar. Actually a roar can mean many things
depending on the tone. I think that humankind is just
oblivious to things that have been around for many
years. I think humans are so silly. See us animals are
much smarter because we understand what is going
on around us. But that’s another story for another
day.”

Share

Comments are closed.

© 2019 themcglynn.com | Entries (RSS) and Comments (RSS)

Global Positioning System Gazettewordpress logo