Carly’s Voice (31 page)

“It’s interesting, some of the things that Carly is telling us about what it feels
like,” she explained to Avis Favaro. “You might get some perspective on girls and
autism.”

“
Telling
you?” Avis was startled. Avis only knew the Carly of before. She had been a nonverbal,
hyperactive whirling dervish with no means of communication other than the use of
some basic sign language and a picture-exchange program.

“Well,
writing
,” Tammy clarified for Avis. Tammy explained how Carly had begun her tentative writing
three years earlier and was now communicating full and emotive thoughts.

“
That
,” said Avis, “is the story.”

Several days later, a news truck, camera and sound technicians, and a producer arrived
at our house. It was a gray, snowy winter day, and Taryn and Matthew were at school.
We had arranged for
Carly to be home with Howard and Barb to assist her in answering questions for the
news producer and crew. Tammy and I were to be interviewed afterward.

Given Carly’s tentative typing, we warned that there was no guarantee she would perform.
She once chastised us,
“I am
not
a trained dog.”
To reduce the stress, we asked Avis to send as few people with as little equipment
as possible. And if possible, send a good-looking young cameraman. Carly loves to
flirt. In addition, the producer provided us with some questions that she would ask
Carly when she came to get the footage. This way Carly could think about her responses.
It was critical, however, that Carly type on her own on camera, as people who had
never seen her type were still skeptical that she wasn’t being coached, facilitated,
or assisted in any way. We understood their doubt, given the juxtaposition of Carly’s
behavior—her humming noises, lack of eye contact, and flopping—with her creative intelligence.
For her own sense of self-worth, we wanted people to see the real Carly.

The day was slow and painful. Carly was rigid with anxiety at first, being filmed
with a camera three feet from her face. She sat and rocked, her finger poised above
the keyboard, unable to type a single letter. Barb and Howard sat to her side at the
kitchen table or at her desk set up in the makeshift work area in our basement. Barb
calmly and patiently encouraged her, knowing that it was important to Carly that people
understand her for who she was, as she had said in her bat mitzvah speech.

The crew did their best to film from afar and keep out of sight, but it was late in
the day before Carly finally began answering the questions posed by Avis’s producer.
Many of the questions put to her were ones we had had for years but in the daily grind
had never been able to ask. So as the producer and the crew pressed on, we found ourselves
hovering in the background, getting to know our
daughter in real time. We were as naïve about Carly’s inner psyche as the viewing
audience.

“What is one of the hardest things you’ve ever had to do?” asked Elizabeth, Avis’s
producer.

“To tell you the truth,”
Carly began tentatively,
“I think I would have to say controlling my behaviors.”
Howard sat several feet away, doling out a Lay’s potato chip for each answer she
completed, a reinforcement technique that for years had in fact helped motivate her
to control those behaviors. To prepare for the day’s recording, I had run out to the
store to buy several jumbo bags and hidden them to avoid a power struggle with Carly.

She continued,
“It might not seem like I am at times, but I try very hard to act appropriately. It
is so tough to do and people think it is easy because they don’t know what is going
on in my body. They only know how easy it is for them. Even the doctors have told
me that I am being silly but they don’t get it. 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.”

We all shook our heads. Not so much in disbelief. We were becoming accustomed to being
surprised by Carly. But she so calmly and intelligently scolded us for our short-tempered
responses to her outbursts and destructive nature, her obsessions and compulsions.
She went on, and in a few short sentences unlocked thirteen years of silence and mystery.

“Can you describe what it’s like to have autism?” the reporter asked her.

In the few years that Carly had been typing, we had asked her few philosophical questions.
We had focused more on the here and now—seeking to understand the issue that required
tackling at the moment.

“Autism feels hard. It’s like being in a room with the stereo on full blast. It
feels like my legs are on fire and over a million ants are climbing up my arms. It’s
hard to be autistic because no one understands me. People just look at me and assume
that I am dumb because I can’t talk or because I act differently than them. I think
people get scared with things that look or seem different than them. It feels hard.”

It took a reporter with the objectivity of an outsider to rupture the wall that separated
Carly from her family—and the world. In the hour or two it took to write her pointed
response, Carly helped redefine herself and possibly all people living with autism
who had not yet found a way to communicate. At the same time, it raised a myriad of
questions about how we might help Carly put out the fire.

For Carly, it was liberating to be able to unburden herself, to explain why she behaved
the way she did. She helped us see her as a person locked in the box that is autism.
For us, the afternoon was emotionally draining. On one hand, gaining insight provided
us with perspective and hope; hope that we could find ways to help. But being confronted
with the raw suffering our child endured daily for so many years was far more heartbreaking
than receiving the diagnosis ten years before. Ignorance had been a gift.

As if to not leave us or the viewing audience with only the heaviness of her struggles,
Carly went on to talk about her favorite memories of growing up.
“One thing I enjoyed the most,”
she wrote,
“is listening to my dad read me stories in bed. Some other memories I had was crawling
in to my sisters bed at night after I woke up and she let me sleep with her. She cuddled
me till I fell asleep. I am so lucky to have her.”

It had always been hard to know if Carly felt a real connection. In general, she only
liked physical contact on occasion. She seldom initiated affection, although we felt
drawn to give her hugs and kisses when she was curled up on the couch or when a mischievous
look crossed her face. In particular, Taryn loved to jump on Carly at night and squeeze
her in an embrace, telling her how cute she is and whispering in her ear.

I could tell from the satisfaction on Taryn’s face, the way her large brown eyes smiled,
how much it meant to hear that Carly adored her. While Carly had confessed how sorry
she felt for stealing attention from Taryn or breaking her things, I have never heard
Taryn complain about her sister’s oddness or the impact she has had on our family
life. Perhaps it’s bottled up inside, but I prefer to believe that their love is greater
than the burden of autism.

The day after the filming, Avis phoned to say they had looked through the rushes and
were thrilled. The story would air later in the week. She told Tammy not to be surprised
if we received a call from ABC, as the two networks often shared stories—especially
those of medical breakthroughs and human interest.

With the filming done, the last of the bat mitzvah thank-you notes written, and life
returning to a calmer pace, Tammy and Taryn took off for a visit to Los Angeles. Matthew
plugged away in his last year of high school; Carly returned to her part-time respite
and part-time homeschooling; and I returned to work. There was something utterly exhausting
about the past month but also utterly stirring. Carly had written more than she had
in the previous twelve years of her life, and we were seeing facets of her personality
we had never imagined. We felt the CTV news report would be a fitting conclusion to
Carly’s coming of age that had started with her bat mitzvah preparations.

The day the CTV segment was set to air, Tammy was lounging by her cousin’s pool. It
was not hot yet in LA, but sunny and clear. With a hectic week planned of visiting
friends and sightseeing with Taryn, she was enjoying the newspaper and a coffee and
just not talking for a while. Her phone rang and she looked quizzically at the unfamiliar
New York area code. Although it was very early on the East Coast, the medical producer
for ABC’s
World News with Charles Gibson
was phoning to get clarity on a story he had just picked up from CTV. He had not
seen the footage yet; typically
they receive only a typed transcript prior to the Canadian airing of shared segments.

At one point in the questioning about Carly’s diagnosis, her breakthrough in writing,
her inability to speak, and all the efforts we had made on her behalf, the ABC medical
reporter John McKenzie said to Tammy, “I’ll be honest. We don’t believe Carly has
autism.”

Tammy snorted. “Well, why don’t you tell me what you think she has and maybe we can
fix this.”

Tammy immediately phoned me. “They want to see a copy of Nancy Robards’ and Dr. Stephensen’s
diagnoses. They’re filed in the bottom drawer of my cabinet in the basement,” she
said.

I drove home from my office and rifled through Tammy’s library of medical files. I
found several reports from various doctors we had seen over the years, including the
original diagnosis, “Carly presents as a child whose presentation in all three domains,
stereotypic behaviors, communications skills and social interaction skills, falls
within the spectrum of Autism—Pervasive Developmental Disorder. Carly is a child who
avoids establishing eye contact, who is picky about the food she eats and will often
spend her time spinning items and rocking back and forth. She makes sounds repetitively
and flaps her hands. Carly continues to avoid eye contact and to resist physical contact
with others. Developmentally, Carly shows developmental delays of global nature.”

The reports were like finding a time capsule. Years flooded back. I remembered reading
these documents carefully, analytically. I had scrutinized the language trying to
understand what they had meant. I knew why I had had such little reaction when Carly
was first diagnosed. Who could have known what
delayed
would mean? Who could have known the physical manifestations of autism? The grating,
grinding, wearing effect it would have on our life? I’m glad no one told us. It was
merciful that Dr. Stephensen’s report didn’t say how we’d spend years not sleeping,
washing feces off walls, and
praying for a real life, or death, or some way out. It was a life of filial piety
in reverse—at times quite literally carrying our daughter on our backs. Unconditional
love is a luxury; even parents have their limits. Ours was tested not in months and
years but in seconds, minutes, hours, and days of physical labor, frustration, and
heartbreak.

Later that afternoon, after ABC received confirmation that Carly’s diagnosis was legitimate,
the phone rang again. They had, by this time, also been given access to CTV’s footage
of Carly, her typing, and our interviews. They were intrigued and wanted to run their
own segment. In fact, they believed Carly’s story was of such interest, they would
delay airing it several days in order to air promotional spots and recut a longer
segment than the one that would be running on CTV that evening. I phoned Tammy, who
confessed that while she was excited by the opportunity, she was a little disappointed
that ABC’s medical staff didn’t come up with another hypothesis on Carly’s condition.
“I was kind of hoping they’d see something else in her. Something we could actually
fix.”

“Who knows,” I responded. “Maybe someone will see the story and have some advice for
us.”

Tammy returned home from LA at the end of the week. She had watched the CTV story
online and we sat in our den to watch it again, recorded on our PVR. “What do you
think, Carly? How does it feel to be on TV?”

Carly sat rocking on the couch, her hands over her ears, and her shoulder-length hair
hung tousled around her face, further closing her in. She made a blowing sound, lips
pursed and vibrating. But there was a knowing smile on her face.

“What are you thinking, Carly?” I asked rhetorically. I knew that even with a large
bowl of potato chips and the patience of Job, I could not get Carly to write for me.
I had to be satisfied with the knowledge that in fact Carly was thinking something.
Something wonderful.

The ABC news story ran the next day. Public response was overwhelming and immediate.
The network’s website, which generally gets a few thousand hits for a good medical
story, received tens of thousands of hits requesting the replay of the segment (several
months later, the online story was still drawing viewers and had reached over two
hundred thousand people). So many people were posting words of encouragement and questions,
ABC asked if Carly would be prepared to respond to a few and they would broadcast
the answers at the end of the news segment the following night. Not yet knowing how
accurately Carly could read lengthy text from a computer screen, Howard read the questions
the producer thought would be most powerful, and Carly set to the slow task of tapping
out her short but perceptive answers.

Question
Name:
Anita
Address:
Boulder, CO
Millions of people saw your story on ABC News. Thousands have written letters of thanks
to you. You are an incredible inspiration to so many families. Everyone is very proud
of you.
How does this make you feel?

Answer
I am so happy. I got a big gift from people around the world.
Among so many kids with autism they chose me to be an advocate for autism.
Where should I get behind a cause like this? I am so glad that I am able to help
people understand autism.