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.
Question
Name: greg
Address: Erie, PA
Hi Carly, after years of not being able to speak, what does it mean to you to be able to tell people what you want to say?
Answer
greg it feels so awesome to ask for things. So how do you speak?
Question
Name: Ailyn
Address: Miami, FL
Carly, I am so happy you found a way to communicate with those around you! My question is what was it like dealing with autism and coping with the frustrations of not being able to communicate your thoughts, feelings, desires and dislikes to your loved ones?
Answer
Ailyn it just sucks when I am alone. I feel very sad when mel goas away. I always yell when I feel like people so don’t understand why I am sad.
Question
Name: jerry and marieanne
Address: Ridgefield, NJ
What can you suggest to me, as a teacher and a parent of young teens with autism, to help them?
Answer
be patient. Try getting a computer. Give them chips when they type.
Question
Name: pgsad
Address: Chicago, IL
What one thing do you think my autistic child would want me to know about him?
Answer
I think he would want you to know that he knows more than you think he does. He is lucky to have nice parents.
Question
Name: mmfreedom
Address: Omaha, NE
Do you believe the behavior therapy helped you and do you think intensive therapy has anything to do with you not only finding a voice, but knowing what to say now that you’ve found the means?
Answer
I think behavior therapy helped me. I believe that it allows me to sort my thoughts. Unfortunately it can’t make me normal.
Question
Name: Colleen
Address: Saltspring, BC, Canada
Carly, you have come so far with all your success. Why do you think in the last year or so you’ve come so far and are able to communicate with more and more people?
Answer
because first Howard believed then dina [one of Carly’s therapists] did. Believing helped. Then time went by and dina left and time went by. Then a miracle happened you saw me type. Then my therapist Mel helped me forget that I’m autistic. She treated me like I’m normal.
Although we didn’t appreciate it at the time, Carly was transforming. Subtly, she was evolving from victim to spokesperson. We watched her intently typing out her advice, amused by the sophistication of the questions people posed to her. “She’s becoming the autism diva,” Tammy joked. “I’m not sure people realize she’s just a kid.” After the second broadcast, hundreds of questions continued to pour in from as far as India, the UK, Australia, and Israel.
I printed out the pages of text, putting it into a binder for her. “Do you want to hear more comments?” I asked her later that week.
“Eh ehss,” Carly approximated. It was one of the few words Carly could still vocalize.
Although challenged to connect with the people in her everyday life, Carly was beginning to connect with millions around the world. People praised her, saying that in finding her voice, she gave them hope that their children or relatives, afflicted with autism, cerebral palsy, and numerous other conditions, would also find a way to reach out.
The emails continued unabated. How had Carly learned to write? Could she help them with their child? What kind of music did she listen to? What kind of computer did she use? Would she consider running for president? The two networks phoned to inquire whether we’d be willing to film a longer-format piece. It would run on CTV’s news magazine, W5, and ABC’s equivalent, 20/20. “It’s up to you, Carly,” Tammy told her. “If it’s too much, say so.”
“Do the show,” she replied.
It was agreed that ABC would be permitted to film all the footage for both networks in order to be less intrusive. Their producer, Alan Goldberg, and medical correspondent, John McKenzie, arrived with a film and sound crew. John spent two days interviewing Carly, Tammy, some of Carly’s doctors, and me. Alan stayed a few days longer covering additional events that routinely occur in our family
such as outings, meals, and conversations. It was like living with your mother-in-law for a week. But Carly seemed to connect with Alan. He had a dry, sarcastic wit that fit Carly’s style. She responds well to humor. Taryn and Matthew hid from view as best they could, self-conscious with the camera. During the additional interviews with Carly, Alan posed questions and Howard, Barb, or one of Carly’s other therapists sat nearby to help keep her focused and on task. The ever-present bowl of Lay’s potato chips remained just out of camera range.
“What do you dream about?” Alan asked, picking up on one of the questions Carly received a number of times from viewers.
“I dream about a lot of things like boys. And food. I don’t always remember my dreams, but I do like them.”
“Are you autistic in your dreams?” he continued, genuinely intrigued. We found Alan took a personal interest in his approach. I felt like he was asking to satisfy his own curiosity, not merely to get a performance for the camera. He became our accomplice in helping us understand Carly; he asked so many questions for which we had never been able to find the answers.
“Yes and no. Some of my dreams I can talk and do things that kids my age do. But some I even have a hard time doing the things I can do when I’m awake.”
“We all have those dreams,” I assured her. “Like when you need to run but your legs won’t move, or make a phone call but you can’t push the buttons.” Carly, it seems, had the same type of anxiety dreams we all do.
“What do you mean when you say you ‘take over a thousand pictures of a person’s face when I look at them’?” he asked. Carly had made this point a few times in recent months.
“It’s the way I describe how we see. All the images come at us at once. It is so overwhelming. When I was young, I couldn’t stare directly at things. I looked out the corner of my eye and even though you may think I wasn’t looking, I was,” she answered.
“Where do you get so much information about pop culture? TV? Magazines? Fess up!” Alan probed. We had all been amazed at Carly’s awareness of the relationship status of movie stars, her knowledge of what musicians were at the top of the lists, and even an understanding of who was running for president in the coming fall’s election.
“I listen to every thing that’s going on around me,” she started. “If a TV is on and I am in another room, I still listen to it or if people are talking I like to hear what they are saying even if they are not talking to me. Like I say all the time, just because it does not look like I am paying attention does not mean that’s the case.”
We were beginning to understand that Carly had more than peripheral vision. She had peripheral hearing. Although she seldom sat quietly in front of the television, if it was on in the other room, she was taking in the information and storing it away. Through the interviews she was now having, first with CTV and now with Alan, we were beginning to get a much deeper understanding of Carly’s range of knowledge and how she had acquired it. Every day was like peeling back another layer of the onion. But rather than seeing more onion, we saw a completely different person.
Alan wanted to get to know Carly as a young woman and not just as an autistic teenager. “Tell me some of your favorite things,” Alan asked her. This had always been a barrier for us. Most kids have favorite toys or hobbies. But Carly never had. Play was not intuitive for her; learning how to play games or do puzzles was a significant part of her early behavioral programming at school.
“I love food,” she responded. We all smiled because Carly has a diminutive frame. Although strong from years of rocking and constant motion, her legs and arms were still slim as saplings and her body willowy.
“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 love listening to music. I like songs that I can rock back and forth to. I like Kanye West, but I’m told he is not better than the Beatles,” she joked, teasing Alan about his favorite musical group. “I like TV but it’s hard for me to sit in front of it sometimes. 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 sometimes.”
As intrusive as the experience was, Carly was motivated and on a roll. We were learning more about our own daughter in a few short days than we had in the past thirteen years.
“If you could go on a date with anyone, who would it be? Why? Where would you go?” Alan wanted to know.
“Brad Pitt. Why? Are you silly? He is very, very hot. Even Barbara Walters agreed with me,” Carly replied, referring to an interview Barbara had conducted recently with the movie star. “I’d like to go to a restaurant. It’s easier for me because most restaurants are loud. No one would look at me funny there.”
Alan smiled thoughtfully. Carly’s self-awareness was becoming one of her most moving and endearing qualities.
Over the few days together, Alan observed Carly baking cookies with one of her therapists, going to the mall with two young women who had worked with Carly in the past, having a dinner at a Japanese restaurant with the family, and going through her daily routine at home. He witnessed the sharp contrasts of Carly behaving like a typical teenage girl, wanting to put on makeup and fix her hair—and then flopping on the floor and banging her head for no visible reason. Although Tammy and I quietly discussed this intrusion into Carly’s privacy during the latter, in the end we felt it was more important for viewers to understand how hard her challenge is. We were concerned that the media would romanticize Carly, filtering out the struggle and showing only the success.
Carly found her brush with stardom uplifting. The only phantom that would haunt her for the next few years would be a handful of skeptics who didn’t believe that Carly could in fact write for herself. Some believed her thoughts were being influenced by the therapists who were assisting her. Some cynics lumped her in with a group of people who had been tarred with the negative aspects of facilitated communication. The news stories only showed short glimpses of Carly’s typing, which is an unfortunate aspect of television journalism. Furthermore, a number of psychologists had staked their careers on the false conclusions that those without speech and with severe autism could not possess advanced intellect, creativity, and “theory of mind.” Carly debunked their years of work and challenged their professional being. For us, we never paid much attention to the naysayers, as Carly had frequently typed with accredited psychologists, doctors, teachers, therapists, and family. We had complete confidence in our daughter, as did all the professionals who worked with her. Although annoyed, we understood the sense of doubt some might feel given the gap between the internal and external Carly.
Alan was respectful and did his best to tell Carly’s story in the 20/20 segment as directly as was possible in the sound-bite style of television journalism. After the segment aired, Carly sent Alan a thank-you letter and a volley of emails ensued over the following years.
Dear Alan Goldberg,
My mother asked me to write you however, I don’t know who you are. See, I was on 20/20 and now I am famous and I have forgotten all my friends and family. I have let the fame and fortune go straight to my head. But wouldn’t you if you were on a show like 20/20? Every now and then things come back into my head. I think I might have had a smelly brother, but I don’t remember.
I do have to say I did not like having to wait through a segment about people eating soap to see me on 20/20. But I am famous now so I can say that. I liked the show but think your boss is crazy. The longer version is ten times better and I don’t look like such a wild child.
I really like your work and when Oprah offers me my own show you will be the first person I offer a job to. You can get my coffee. Lol.
I miss you and just want to say thank you for doing everything you did.
Your famous super diva,
Carly Fleischmann
Oh, just to let you know, If you want to do a follow up that’s okay, but I
want my own trailer.
Sometimes it takes an outsider to help us see what’s right in front of us. As invasive as it had been, I question how long it might have taken for us to embrace Carly for who she was had we not pursued the story. And without the microphone and camera, I wonder if Carly would have marshaled the inner strength she was beginning to show.
19
Coming Home
[11:24:56 AM] Carly joins conversation
[11:25:08 AM] Carly says:
can my house have a pool
[11:25:22 AM] Arthur says:
hi carly.
[11:25:42 AM] Arthur says:
well, mom and i have talked about putting a pool in at home.
[11:25:47 AM] Arthur says:
i know you would love that.
[11:27:55 AM] Carly says:
and a big bathtub
[11:28:20 AM] Arthur says:
I’ll bet you would like a “hot tub.” do you know what that is?
[11:33:29 AM] Carly says:
is it the one that the w ater shoots up your bum andfeet
[11:33:48 AM] Arthur says:
ha ha. you are funny. yes, you are right.
[11:34:01 AM] Arthur says:
a hot tub has water jets that shoot water. it feels nice.
[11:35:56 AM] Carly says:
i want one
[11:36:13 AM] Arthur says:
well, we’ll have to see how it all works out.
[11:36:46 AM] Arthur says:
mom and I are working with Adam’s parents.
[11:36:57 AM] Arthur says:
we are trying to arrange for a house in toronto.
[11:37:25 AM] Arthur says:
It would be much closer and you could come and go more frequently.
[11:37:42 AM] Arthur says:
the house we’re looking at right now is closer to my office. it is down town.
Carly’s Voice Page 22