Carly’s Voice

by Arthur Fleischmann

  The highlight of the trip, particularly for Carly, was our visit with Ellen before joining the audience for her show. Carly sat on a couch next to Howard, all of us crowded into Ellen’s small dressing room. The room was packed with clothing and a makeup table. Ellen’s Guitar Hero game stood off to the side.

  Ellen greeted us all warmly and introduced us to her mom, who attended most of Ellen’s shows. Carly and Ellen sat on her couch, with Howard off to the side, while the rest of us attempted to stay out of the way in the snug room.

  Carly had prepared questions for Ellen in advance in case her anxiety prevented her from typing. Carly was curious about what Ellen did in her time off and what it was like to be a celebrity. Ellen graciously answered all of Carly’s questions, commenting that it was a pleasure not to be the one asking them for a change. I observed Matthew and Taryn watching their sister with an amused pride. As we shuffled out to our seats, Ellen gave Carly a hug, and invited her to come visit again. “You’re an incredible woman, Carly,” she said.

  Our meeting with Ellen felt less like a brush with celebrity and more like closing a loop. Carly wanted to be able to thank Ellen face-to-face for “lending me her voice,” as she described it. The reading of the speech was a very personal act and we all felt an enormous debt of gratitude, something that could not be paid off in an email.

  We celebrated the day by having dinner at the Polo Lounge, an iconic restaurant in Beverly Hills. I thought we might be pushing our luck with Carly’s ability to hold it together after a tiring day, but she seemed to be holding court.

  “What would the lady like to order?” the waiter asked. I sensed he was from an era when being a waiter was a cultured art form and smiled at the respect he paid my daughter.

  “Chicken strips and salad,” Howard replied for her, and Carly’s right hand went to cover her ear as she looked down and smiled.

  Sitting at the large round table with my family, live music playing in the background, and the sun fading through the windows overlooking the shaded terrace, I realized I was actually having fun. Too often, events were to be gotten through—an accomplishment if completed without disaster. But here we all sat, enjoying ourselves. Carly’s netbook computer lay open to the side of her place setting. Though she was too tired to write further that night, she was clearly happy.

  I had given up hope that we could go away as a clan and all get something out of it other than a black eye. The logistics, squabbling, and feeling of walking on the eggshells of Carly’s composure negated the pleasure of travel. With Howard’s help, however, and years of waiting, Matthew and Taryn were finally getting their sister back and I was getting a complete family.

  The trip, in fact the entire previous year, was as transformative for me as it was for Carly. I was coming to the recognition that Carly was a person independent of me. Dependent in need perhaps, but not in spirit. She was capable of having relationships and dreams, bonding with people and places outside her circumscribed world, and feeling pride and joy in doing so. As we headed back to Toronto, I was glad Tammy had convinced me to make the journey. It was easy to assume the worst and live within tight boundaries. Maybe LA, a city known more for eating dreams than making them come true, wasn’t so bad after all. Our experience with Ellen was anything but superficial. Our friends were more welcoming and generous than we could have imagined. And we found a tight-knit community of families with similar challenges to ours who were open to new friendships. Maybe LA really was a city of angels.

  Dear Ellen,

  I am writing you because I need to give you a big thank you.

  I know what you are thinking. Why am I thanking you?

  A few weeks ago on your show you were talking to Oprah on Skype and she told you that you were going to be on the cover of O. That’s very cool, by the way. Congratulations.

  But that’s not why I am thanking you. It’s what you said after she told you that you were going to be on. You said set goals for yourself, that you can do any thing if you just try.

  Well I took your advice.

  I set two goals for myself. One was to be heard and the other was to help kids that are in the same boat that I was in to get their inner voices out. So again I have to thank you.

  I remembered you saying that if you have something important to say, say it on CNN. So I looked for the oldest person there and I found him . . . Larry King. I wrote him a letter but Barb and Howard told me he gets thousands of letters a day. And if he is really that old I did not know how much time I had. I was stuck at that point so I thought I would ask all my friends to help. I knew if lots of people supported me, he would have to listen. So I started a petition to get on his show. I figured it would be something you would do but your petition would be probably to ban glitter. But mine’s just as good, I think.

  My goal was to get 5000 signatures in two weeks. Barb did not think I could do it. She even told me to lower it. Don’t tell her but I was going to listen to her. But I had a small feeling I could do it and you always go big. Why couldn’t I?

  After the first day and I went over my 1000 mark, I knew I was going to make it. By the third day I was at 3200 and Larry was knocking, well sorry, calling. I got to go on the show and I was even on with your friend Jenny McCarthy. I wrote a small message an hour before the show started and he played it on the show.

  It was not the way I wanted to do it but it would have taken me way too long to write while the show was live. I still want to do a pre-taped show with him, so people can see me type.

  I have to say I am sorry I stole one of your lines. I hope you don’t mind, the one that you said people wont listen till some one stands up. Well I think Larry really liked it, so please don’t tell him I got it from you. I really just want to say thank you for making me believe in me.

  Your autistic late night guest,

  Carly

  Oh some one asked if I would do Oprah show and between me and you, you’re the better one. Don’t tell Oprah.

  18

  Discovery

  Q: Carly, tell me about some of your favorite things? What kinds of books do you like? What kind of music? TV shows? Why?

  A: I love food. I like eating chips because they taste so good. It takes a lot out of me to read a book but i like when someone reads it for me. I like listening to Septimus Heap. It’s fun because i can picture it all in my head from what Septimus looks like to the castle gates. I love listening to music i like songs that i can rock back and forth to. I like kanye west. I like tv but it’s hard for me to sit in front of it some times. It’s too overwhelming. I like to sit to the side of it and just listen. I love watching the Ellen Show. She makes lots of noises and makes me forget that I’m autistic some times.

  —From a conversation with the producer of ABC’s 20/20

  As I’ve said, Tammy is a news junkie. For her, news is something to be scoured over, clipped, and responded to. One Sunday in late January 2008, she was reading an article in The New York Times about girls with autism. The article explained that not only was the incidence of the disorder lower among girls than boys, there were unique aspects and abilities among females with autism. Unlike boys, the research noted, girls may have a greater sense of empathy and emotion, a concept known as “theory of mind.”

  “So this could explain why Carly seems so different from some of the other kids we know with autism,” she said. “They’re all boys.”

  Over the years, Tammy had tracked stories and research about autism. But this one stood out because it specifically addressed girls, who seemed to be the forgotten afflicted. One reporter whom she felt did an excellent job at advancing the understanding of the condition was a woman named Avis Favaro, the medical reporter for one of Canada’s national television networks. Tammy had done an interview with Avis many years before, when Carly was four and we, along with many other families, were locked in a battle with the government for additional funding for autism services. So when Tammy read this pivotal article, she promptly called Avis to see i
f she would be interested in exploring the differences further.

  “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.”