I’ll e-mail you soon about my assignment.
Your proud and excited student,
Carly
I needn’t have worried about Carly rising to the challenge of school. Carly was motivated by the intellectual stimulation and by the opportunity to be around typical teenagers. We could feel her enthusiasm despite her narrow range of emotion she demonstrated physically. She was eager to share her experiences with people in her social network on Facebook and Twitter.
“Working on high school homework. I always wanted to say that,” she posted one afternoon. I wondered how many of the other kids at Western felt as enthusiastic about schoolwork. Carly had always been a hard worker. Even the simplest tasks took her months of practice to master. Now, spread out at the dining room table with articles and textbook chapters to read, she was finally working on what she wanted. And while it still took her weeks to type out what some students could do overnight, her enthusiasm never waned.
Despite the energy required to produce relatively terse output, Carly devoured her assignments with gusto. It was a chance to demonstrate to the world that despite appearing disabled, she had plenty to say. As the class turned to Freud and the psychology of dreams, Carly noted on her Facebook page, “Is it just me, or does anyone else think Freud was a pervert? Lol.”
Every afternoon that she wasn’t working with her occupational therapist or going swimming, Carly worked on her first major high school assignment. She had not let on how she planned to tackle it, proudly feeling the need to prove that she was capable of producing work without anyone’s help.
“Freud was obsessed with dreams and their meaning,” she typed out for her teacher. “But if he was alive today I think he would be fascinated by the bond and relationships between a nanny and the children she cares for. This song is written for a nanny to sing to the children she cares for. It’s a good thing Freud wasn’t around to psychoanalyze my song,” she concluded before typing out the words to her lullaby.
I was a little perplexed by the topic, as Carly had had two nannies in her lifetime, neither of whom was a theme in her previous conversations or writings. “Okay,” I said to Carly, “will you show me what you’ve written?”
Wishy Dishy
Wishy dishy I’ll fold your clothes,
and then I’ll tickle your little toes.
Wishy dishy I’ll make your food.
That should put you in an amazing mood.
Wishy dishy I’ll hold you tight
and stay with you til the pale moonlight.
Wishy dishy let’s wash your hands.
Then I’ll tell you a story I promise you’ll understand.
Wishy dishy dinner’s almost done
and then we can have some real fun.
Wishy dishy time to close your eyes.
It’s time for your nanny to say her good-byes.
Wishy dishy you’ll never know how much I love you so.
“I love it, Carly,” I said enthusiastically, and gave her an unrequited hug. I was moved by the simplicity of the lyrics as well as the maturity of thought.
The time Carly would get to spend in class was short that spring, only about eight or nine weeks, as classes ended early for exams. But she soaked up every minute and proudly told everyone who cared to listen about her experience in school. It was the ultimate “I told you so,” as she had been asking to attend a traditional school for years.
As a final psychology assignment, Carly was required to describe three of her dreams and then analyze them using the basic psychological principles she was taught in class. I waited expectantly. Would her dreams be conflicted and anxious to match her internal tension? Or would they be lofty and exciting—a reflection of a vision of some future self? Over the years of receiving notes from fans and followers, Carly had been asked repeatedly about her dreams. Though she confessed to vivid visions, she had never described any in detail.
When her assignment was complete—or as complete as she could make it given the creeping pace of her typing—she wanted to share it with both the teacher and the principal.
Dear Ms. Liko and Ms. Abrams,
I just would like to thank both of you for giving me the amazing opportunity that you did by letting me participate in the Dream Class. I enjoyed being apart of the class and school. You both may never really know how much it meant to me that you believed in me. I hope I made both of you proud and I hope that I will be able to see both of you in the halls next year.
Your hard working and eager student,
carly fleischmann
Carly then spread her dreams out in front of us like a patchwork quilt. Each one seemed to represent a shard of her experience among us. In one, which she referred to as a recurring dream, she was invited to speak to an audience about her experience with autism.
I am in a dark room. I can’t see anything but hear voices. At first it’s little whispers but then the voices appear louder and louder. I start turning around and around to see who’s talking but because it’s so dark I am not even sure if I am actually turning. I stop moving and right at that moment over a hundred lights turn on and I am blinded once again but this time not by darkness but by lights. The voices start to fade lower and lower. I can hear hushes like people trying to silence a crowd. My eyes start to show images, foggy images but nonetheless images.
I start to see blurry faces that seem to surround me. When the fog finally dissipates I find myself on a stage in an auditorium. This stage is not a normal stage. It’s round and the audience surrounds you. You can feel hundreds of eyes looking at you from every direction.
I start to pan around and as I complete my 360 a voice suddenly talks over a loud speaker. Because the voice comes out of nowhere I jump back. Startled, a man in the front row gives me a weird look and I turn away from his gaze and begin paying attention to the voice.
The voice is announcing me as Carly Fleischmann, an autistic girl, who found her voice by using a computer to communicate. The voice of the announcer goes on to say I will be talking about autism and ways to cure it.
I can’t believe my ears. I remember thinking if I could cure autism wouldn’t I be the first person I’d cure? Finally the voice says “without further adieu, Carly Fleischmann.”
I look around this small round stage and I notice my computer is nowhere to be seen. I start to panic and I can feel thousands and thousands of eyes looking directly at me. I start to scream and notice something strange. I have control of my voice. I look out in the crowd and try to say a word. At this point my view changes and I can see myself. With my lip quivering I manage to say the word “hi.” Shocked, I say “My name is Carly Fleischmann.” Then I start talking more and more. All of a sudden someone from the audience says “Aren’t you supposed to be using a computer?”
I tell him “I don’t need it anymore.”
The man stands up and says “I’m not paying good money to see a girl that can talk” and he starts to walk out.
The rest of the audience starts to agree with him and walks out. I am left all alone on the stage thinking I just was able to do what I’ve not been able to do for many years, that is talk. And now I’m being punished for it. Then all of a sudden the lights go off all around me and I wake up.
Most people see only Carly’s external conflict, the battle to control the outbursts and urges that govern her interaction with the world. Beneath the skin lies deeper conflict. For years she had been writing that the world must believe in people with disabilities, believe they have an inner voice and purpose aching to get out. I assumed her proselytizing was for our benefit: We will be better people if we believe in those who are unlike ourselves. But Carly’s dream gave me a peek into what it must feel like to be someone under constant scrutiny and doubt. She once said in an interview that she has never used facilitated communication, and bristled at those who were skeptical about her ability to produce original creative and emotive thought. She reminded people that no one had a hand “up her butt” telling her what t
o say. We laughed at her words, but their meaning was pivotal to her.
At some point, we all have anxiety dreams: showing up unprepared for an exam or arriving at school in our underwear. Carly’s dream showed a more complex set of anxieties. The media—social and otherwise—had portrayed her as a thought leader in autism ever since she started communicating the experience of autism. She often seemed to relish the role by asking people on her Facebook page to send her questions about autism to “get it out in the open.” Is there a paradox here? The more she yearned for the limelight, the more stress she felt.
Worse than the weight of responsibility is the snare of cynicism. Who is the man who scoffed at her in her dream? He is everyone that has doubted Carly all her life. Carly learned that if she did not communicate, she would be thought of as intellectually delayed, the disabled person her doctors had predicted she would be as a child. But if she did communicate, she is a sham because people who fit her description, according to many psychologists, are thought to be incapable of creative thought. Tammy and I had seen the accusations online before. That Carly must not really have autism if she can articulate her feelings so eloquently. Or that her writings must somehow be facilitated or coached. Carly found herself playing Cassandra: screaming the truth to the deaf ears of disbelievers.
And a new worry laid on the pile of parental neurosis was the fear that Carly would give up trying. If communicating is a monumental task and yet met with skepticism, was Carly’s spirit sufficiently strong to persevere? She once wrote her friend Gaby, “Do you ever feel misunderstood? I do all the time.”
Carly’s dream project continued, revealing other facets of her inner sanctum.
My next dream takes place at a school. I find myself walking the hallways to get to my class. The bell has rung and I know I’m late but even though no one is in the halls I feel like I am working my way through a crowd. In the hallway I see a clock. The hands start moving around and around. I’m trying to make my way to the stairwell but it feels like it is taking forever. I look down on the floor and notice I am standing on a floor escalator the kind they have at the airport and I am going the wrong way.
I start to run and manage to make headway. I get to the end of the hallway and start to ascend the steps. Then I notice them start disappearing behind me. Afraid they might vanish in front of me, I start to run and run. I make it up the stairwell and turn the corner to my classroom. I put my hand on the door and the bell rings. The class empties and the crowd from the class knocks me and pushes me all the way back to the start of my dream.
I see this as an anxiety dream. How many times have I dreamt of trying to make a phone call only to have the buttons on the handset disappear or to run like a cartoon character, my legs pumping but covering no ground. I am not surprised that Carly would have feelings of stress as she begins growing from a girl, protected by the confines of her disability, to a young woman entering the mainstream world.
Carly completed her project with a dream that made me smile, although I don’t believe she saw it as a lighthearted vision.
In my last dream I was on a beach with Brad Pitt and Justin Timberlake and we were sitting together talking.
We started to laugh and all of the sudden a reporter started asking me questions and then another and another. I looked over at Brad and Justin for help but I could not see them and was surrounded by reporters. I tried pushing my way out of the crowd but kept on getting knocked back into the middle. A man with a deep voice said, “Carly, I’m coming to get you.”
The sea of reporters started to sway and I saw a large, dark hand appear in the crowd. Another one emerged and just like a parting of the sea, this man opened his arms and cleared a large passageway through the people. I started to follow him into a small building and the crowd of reporters began to follow us. We started to run and run.
And the man said, “Do you see the room at the end of the hall? Go in there and lock the door.”
So I headed to the door. When I finally got there I put my hand on the door and it was locked. I turned around and saw the reporters running at me. They came closer and closer like a freight train. Just as they were about to run me over I woke up.
Even without her assessment of what she thought this dream meant, I was left with a melancholy smile—amused by the presence of her two longstanding crushes and concerned about the presence of the media. I wondered if in fact her public attention hadn’t been a double-edged sword. Carly has had more public involvement with press and social media fans than most teens. While she had voluntarily put herself out there, I wondered if it was taking a private toll on her. But Carly has her own mind and a steely determination. She had found a calling in life—to share the truths and debunk the myths of living with autism—we let her steer the boat through those waters believing it would build her self-esteem.
Many aspects of her dreams were, I’m sure, typical of a teen growing from childhood. For Carly I am sure they were heightened, as all of her senses seem to be, electrified by the voltage that surged through her body. I am reminded how far she had come. How far we had all come. I thought of something Carly had once written, “Living with autism has been hard at times and the gains are great, but challenging to get to.”
How simply she captured a decade and a half of struggle, but her dreams told me she was only partway to her ultimate goals. “How far do you want to go?” I asked her at a team-planning meeting.
“To be honest I don’t know yet. I would like to travel. I would like to go to university. I would like to date.”
“How wonderful,” everyone told her.
I closed my eyes and tried to imagine what it would take to make that wish come true.
A Final Dream
We are sitting around the dining room table. But we are not eating. We’re having some sort of meeting. Tammy, Carly, Howard, a therapist Carly works with to help her with her OCD. And me. We are talking about Carly’s future and where she sees herself. We are talking. Carly is writing.
She tells us she understands that she is not the easiest kid to bring up, yet how hard she tries—every day.
We acknowledge that we know and are very proud of her.
She ponders what life will hold for her. Whether she will ever be independent, be free of torment. Regardless, she says, she has plans.
Carly writes that she loves us and forgives us for the things that she has had to endure. Things that a child should not be asked to endure, I think to myself. Not by her parents.
I am moved and proud and tearful.
But in this particular dream, I am awake.
24
Take a Bow
I was asked if I had to pick another disability other then autism to be what would it be?
My answer to that is: I was once told a blind man wanted to be deaf and a deaf man wanted to be blind. But its always better to be your self.
—Carly, May 2009
Carly’s experiment—attending a class for gifted students at a local high school during the 2009/2010 school year—had been largely successful. Although it was a few months by the time Carly was successfully registered, she had proven to the school and to herself that she could sit reasonably quietly and complete several of the assignments. More importantly, she won the hearts of her teachers and fellow students. Rather than return to Carlton in the fall, Carly would be attending Western on a full-time basis.
Before our summer plans got under way, Carly was invited to introduce Temple Grandin at a conference being held at a university an hour north of Toronto. Dr. Grandin was diagnosed with autism as a child in the 1950s, when it was generally accepted that those afflicted with ASD would spend their lives in institutions. Through her mother’s dedication and her own creative problem solving, Dr. Grandin progressed through school, completed a Ph.D., and embarked upon a career in animal husbandry. Dr. Grandin was a vocal advocate for those living with autism and sensory integration issues, and she had been invited to speak at the event slated for late June, the w
eekend before Toronto hosted the G20 Summit.
Carly confessed to being very nervous about the task. Temple was a hero, and introducing a hero is a daunting task. With only two weeks to prepare the opening remarks, she wore the pressure like a lead blanket. Each time Carly sat down to write the address, she would close the computer before Howard could save her work, intentionally deleting it.
“It was really good,” he said. “But I guess she doesn’t think it’s good enough.”
We encouraged her to just put it down and we could edit it later. Eventually Carly was able to finish her speech and we saved it before she could deliberate further. Her mood seemed to brighten and her anxiety lifted.
Days before the event, she joked on Facebook:
So when i was on 20/20 they had a thing called a trailer that they ran over and over. It was something like ‘Autistic nonverbal girl with what seemed like no hope found her inner voice and now has a bright future. tune in at eleven’. So I decided to write a real one for this Thursday. I am about to post it so tell me what you think of it. ‘This Thursday great political minds are going to sit in a room and talk about absolutely nothing at the G20 summit. One hour away two autistic ladies are going to be presenting and changing the way people view autism. Temple Grandin and Me, Carly Fleischmann, this Thursday. Straight from the horses mouths.
Carly had now made several presentations of this nature—though none as auspicious—yet she still got very nervous about her ability to control her behaviors. She needn’t have worried. Tammy and I sat in the front row and watched Carly seated on the dais with Howard to her right. Mustering all of her energy, she sat calmly, swaying slightly, her right hand on her ear—a gesture she would eventually tell us helps her alter the sounds around her. The digitized voice from her computer echoed through the university gymnasium. Carly’s written text scrolled across two enormous screens for the audience of eight hundred people:
Carly’s Voice Page 30