Carly’s Voice

by Arthur Fleischmann

  Carly wrote a note to Larry King that we passed on to one of his producers we had come in contact with some months before. As would become a recurring theme, once Carly gets something in her head, we all end up part of the plot. I also noted that Carly seldom shared with us much of her experience with autism—despite our questioning. However, when she wrote for strangers, or responded to questions on Facebook, she shed light on mysterious and hidden aspects of her life. I was all for that.

  Dear larry king

  My name is carly grace fleischmann I just turned 14 years old and ever since I can remember ive had autism. I am non-verbal but have found amazing way to communicate my thoughts and needs.

  CNN showed my story a year ago and so did other news stations. Since then I have had an apifany [sic]. I hate or maybe a better word is dislike the way so called experts try to explain the world of autism.

  If a horse is sick you don’t ask a fish what’s wrong with the horse.

  You go right to the horse mouth.

  I want to do something I have never done before

  I would like to sit down and educate you and your listeners on autism

  I am not the fastest typer in the world but if you pre tape our interview you could edit my response to match your questions

  But I want people to know that know one is telling me what to say and I don’t have a hand up my butt like a puppet I would love to answer any emails question your audience might send

  your true autism expert,

  Carly fleischmann

  We received a call from the show’s producer on April 3, the day Larry was covering the topic of World Autism Awareness Day. “Would Carly like to participate in this evening’s broadcast with Jenny McCarthy and several doctors who specialize in ASD?” she wanted to know. “We’d set it up on Skype and she could be our autism expert and guest blogger.”

  We had about two hours for Carly to prepare a statement to be played via computer. Carly would then stay online for the remainder of the show to answer questions that audience members posted on Larry’s website, if she was able to sit and focus. It wasn’t exactly the full-blown interview Carly had imagined, but with her growing desire to share her experience more broadly with the world, it was a coup.

  Racing home, we called Barb and asked her to come over. In particularly anxious situations, it made Carly feel more relaxed to have both Howard and Barb at her side. She now had just over an hour to write a message about what she called the “truths and myths” of autism. We then had to send it to the producer for vetting before airtime. The next few hours were chaos—like a war room on election night. Howard and Barb sat with Carly while she wrote in the dining room. Tammy and I worked out the logistics of using our computers for a remote hook-up and did a video and sound check with the producers in Atlanta and Los Angeles. Matthew was away at college at that point so we called him to let him know to tune in. Taryn weaved in and out of the kitchen, dining room, and den, not sure what to do with herself. Even our dog seemed to be pacing.

  We were told approximately what time Carly’s segment would air and had to stand by for the phone call from the producer in the studio telling us to take our places and be cued to start the reading. My stomach was in knots. Asking Carly to comply was always a risky proposition; we had never put her under the kind of pressure live television created. Carly, however, was adamant that she could handle it and wanted the world to hear from “the horse’s mouth.” I paced one end of the kitchen, behind Carly and Howard, so as not to distract them; I had the phone in my hand waiting for the call. Barb, Tammy, and Taryn were on the sofa watching the show as if it were the last heat of a race.

  The call came about thirty minutes into the show. I gave Howard the nod as I heard Larry from the TV in the den: “I’d now like to introduce Carly Fleischmann, our special correspondent.” Carly pressed the space bar on her computer, the trigger to start WordQ, the latest type-to-voice software she was using on her computer, and she sat, somewhat noisily, with a proud smile, rocking back and forth on the kitchen chair. On the screen was her written text:

  For as long as I can remember I have had autism.

  I overheard Jenny McCarthy say that her son commented that he felt like Dory from Nemo [Disney’s Finding Nemo] because he didn’t remember things when he was autistic. However I have a great memory for many things. I also know many autistic kids that are exactly the same way. Parents know what I’m talking about, kids that can tell you the name of every subway line or that can memorize line for line different movies and tv shows.

  Doctors would like to tell you that we have a hard time processing information. Its not really true, our brains are wired differently. We take in many sounds and conversations at once.

  I have learnt how to filter through some of the mess.

  Her piece was abrupt, as she had had so little time to prepare. I knew it was not the entire story she hoped to share. But it was a start on her road to becoming the self-described “autism advocate.” Appreciative of the opportunity to get her message out to a wide audience, Carly emailed a note to thank Larry, but told us that she still wanted to do a real interview, as she had so much more to say.

  Larry’s producer called us a few days after the show aired, to thank us for participating. “Tune in for the Sunday night rebroadcast of the show,” she said. “Larry reads part of Carly’s thank-you note and addresses her.”

  We huddled around the TV at the appointed time, watching the way some people await election results. “And now an update on our special correspondent, Carly Fleischmann, who was on this program last week to talk about living with autism,” said Larry in a piece added to the end of the original segment. “She wrote me a letter, which read in part, ‘I would like to thank you for having me on your show . . . Children with autism need their story told. We need help. We need people to believe. We need people to understand. We need people to listen. In three and a half days people believed in me enough to have almost 5,000 sign my petition to tell my story. I still think it’s a very important one. I love the fact you had me on your show and by doing this I believe that you believe.

  “‘I was told once no one will ever listen till someone stands up. Well I am standing and I was wondering if you would stand beside me. It’s been a hard process for me to get to the point that I am able to spell. I believe we all have an inner voice. We just need to find away to get it out.

  “‘You said that there are a lot of things about autism you have not gotten to but you will try to touch on a fair bit. Let me be the first to open those doors. Your optimistic and able to back it up believer, Carly Fleischmann. Oh Thank you again for everything.’

  “Well, Carly,” Larry closed, “we thank you. And look forward to hearing again from our optimistic believer.”

  Tammy and I were keen to encourage Carly’s newly found purpose, believing it would be good for her self-esteem. There had been a lot written about teen depression in general and the higher incidence among those suffering from ASD. A healthy sense of self-worth, we felt, might counterbalance Carly’s struggles. Though her transformation was as slow moving as cold molasses, it was undeniable that Carly was indeed growing. Our daughter was determined not to be seen as the autistic girl without a voice but rather as the voice of autism.

  Partway through the school year at Carlton, Howard cautiously tested the water with us about public school once again. “What if we could find a school near Carlton where she could go to one class per week. Just to try it,” he mused.

  “Howard, you are like a piece of sand in an oyster,” I said.

  He smiled, knowing it wouldn’t take much for Tammy and me to get started again. Howard has an uncanny sense of timing, allowing us to rest just long enough to catch our breath before whipping us up the next hill.

  Over the next few months, while I mulled over the possibility, Tammy got to work. “What about Western?” Tammy asked, referring to the large high school within our district. We had heard positive reports—despite the
complaining about public schools that was in vogue. This particular school had a broad range of resources including an inclusion program for kids on the autism spectrum, though to our knowledge none of the students at Western dangled so far off the edge of the spectrum as Carly.

  Looking at the school’s website, Tammy noticed that Dennison Children’s Services, the government agency that had helped provide respite and funding support for Carly over the years, had on-site counseling services for students at the school. She immediately called our social worker at the main office to inquire if they could help.

  Within a few weeks, we had a meeting scheduled with a counselor, and the principal, Elaine Abrams, as well as a special education representative from the school board and one of the special education teachers at the school.

  “Okay, now that we have a meeting, we need to figure out what we’re going to say,” Tammy said to us several days after she spoke with Steve.

  “I have a game plan. You will have to wait and see,” responded Carly.

  Tammy looked at Howard, inquisitively.

  “She’s fine,” he said. “She’s writing out her request.”

  On a warm fall day in 2009, just after the start of the traditional school year, Howard, Tammy, Carly, and I walked through the front entrance of Western feeling like the Little Rock Nine. We had not often felt welcome in the public school system in the past, so despite the encouragement of Western’s principal this time around, we remained on guard. Carly was assured a place in public school by law. That wasn’t the concern. She wanted to be in a mainstream school, and the school board was required only to provide a placement they deemed appropriate for her abilities, possibly in a developmentally handicapped classroom. With Carly’s intelligence and willingness to learn hampered by her behavioral constraints, finding a spot that made all parties happy had proven impossible in the public school system. Unlike the U.S., Canada does not pay for private placement when a public classroom is unavailable. Getting Carly into a mainstream high school with the right support network had been our dream and our main struggle of the past ten years.

  Western, a large gothic building, is often used in the filming of movies and television shows, as it is the quintessential city high school: imposing and a bit scruffy, but full of energy. As students drifted from their after-school activities, we waited in a converted classroom that was used by school staff for conferences and meetings. The air in the room was heavy with the day’s heat and lack of air conditioning. I looked distractedly around the room at the mismatched furniture. The west wall of the long room was a bank of impossibly tall windows covered with blackout curtains of a mysterious green synthetic material. They sagged in sections, clinging to the curtain rod for dear life. The tables were arranged in a horseshoe and we took our seats to one side as our hosts shuffled in.

  Elaine strode in last, and with great purpose.

  “I’m so sorry to keep you waiting. It’s commencement next week and we have diploma packages to prepare for almost five hundred graduates,” she explained breathlessly. Not a tall woman, Elaine nevertheless commanded presence. She introduced the staff with a confident formality, her posture straight enough to pass a grandmother’s inspection.

  “How can we help you?” she asked from her seat at the head of the table.

  I suggested that perhaps the best way to articulate what we were hoping to accomplish for Carly was to let her present her statement. She had been fighting a cold and was not feeling well. In the heat of the room, she looked like a melting ice cream cone. “Is that okay, Carly?” Howard asked.

  “Ess,” she replied sleepily as Howard opened her laptop and turned it toward Elaine and her colleagues. Howard opened the document and booted up the software that breathed voice into Carly’s words. The prepared statement was delivered from the computer in the familiar monotone:

  “It’s funny because I feel the schools are using labels to hold people back. I am autistic but does that mean I can’t be a part of the same education that someone who is not autistic gets? If Albert Einstein was around in this century, fifty out of a hundred doctors say he would be diagnosed with learning disabilities and ADD. The other fifty say he would have been on the autism spectrum. When Albert went to school he was in a one classroom school house and was given a chance to learn. His teacher was quoted saying that Albert did not pay attention to any of the lessons that she taught him. She went on to say that he had to wear the dunce hat more times than she put logs in the fireplace. Yet she still gave him an education that led us to E=mc2. What if he was born in today’s time and put in a segregated school? Would we know what E=mc2 means?

  “Stephen Hawking was seven years old when he lost all oral ability in his mouth. He made lots of sounds but could not talk. Thanks to some amazing teachers that saw the potential in him, Stephen stayed in a mainstream class and is now one of the smartest men in the world with a PhD in science and many papers on black hole phenomenon. But what if the teachers did not let him stay in school? Do you think he really would have met his potential?

  “I am not saying I am going to come up with the next E=mc2 or write a dissertation on black holes but I would like the one thing these two individuals and many more like them had and that is a chance. School is about teaching young minds knowledge and I have proven with my IQ test that I take in all the information that is given to me. So please help me fill my head with knowledge. I am eager to learn and eager to put my own stamp on the world. Please help me do so.

  “Thank you for listening to me I am willing to answer any questions you may have now.”

  A silence hung in the room. The broad metal venetian blinds, hanging awry, swayed slightly in the stingy breeze.

  “Well,” I heard someone say, and I looked up. Howard had the sheepish smile he wears when he knows Carly has won her point.

  It was the end of a long day for everyone and we could see that Carly was fading fast. “We need to think this through,” said Elaine, finally. “I have a few ideas, but I need some time.”

  She continued, looking directly at Tammy, “I want to make this work. There is a teacher here who has experience with students on the spectrum. Mostly Asperger’s. And she teaches a class for our advanced pupils; it’s in our gifted program. The course is on modern thought and philosophy. From what I’ve read from Carly, that might be of interest? If we can make it work out.” She gave herself the wiggle room.

  “How cool is that?” asked Tammy. “Would you like that?”

  Carly was slumped against Howard, clearly feeling unwell. But her eyes brightened, her trademark half smile of self-satisfaction.

  “That would be amazing,” she typed. I smiled at the thought. From an ABA school to a gifted program; that would be amazing.

  Over the coming months, Elaine worked through the details of how Carly might attend the class without contravening board or union protocols, which are rigid in Canada. Carly seemed to draw upon all her resolve, and while she was still not able to write with her teachers at Carlton, her freak-outs at school dramatically lessened. It was quid pro quo. We trusted in her to attend high school, and she redoubled her efforts at controlling herself.

  It took until spring 2010 before we finally had permission for what we termed the experiment. Carly would attend Ms. Liko’s advanced philosophy class that was just embarking on a module about psychology—one of Carly’s areas of interest. Two or three times per week, Howard would pick her up from Carlton and drive her to Western. “If this goes well,” said Elaine, “over the summer we can talk about whether Carly might be interested in enrolling at Western full-time.” You could almost feel Carly’s body vibrate with anticipation.

  “How’d it go?” I asked Howard after their first day in class. “Did Carly hold it together?”

  “She did. She was amazing. Not a peep. And the class is over an hour long.”

  “Were the kids freaked out by her?”

  “Not at all. We showed the 20/20 video to help them understand. And these are
mature kids. Bright. Mostly grade ten,” he said.

  When Barb showed up later that day, she asked Carly about her first day at school.

  “It was very hard and Howard kept on bugging me asking if I wanted to go.”

  “We were only supposed to be there for fifteen or twenty minutes for the first day,” Howard defended himself. “I felt like I had to ask you if you wanted to go.”

  “Do you accept that explanation, Carly?” asked Barb.

  “If I have to,” Carly snipped.

  “Carly, what strategies did you use today or what were the situations in the class that made it work today? Knowing may be helpful in the future,” Barb asked.

  “I think it was just the fact I kept on telling myself this is my way out of ABA schools.”

  “Given that this was hard for you and you had to keep telling yourself to focus, were you still able to listen to what was being said? Could you still learn?”

  “yes,” Carly replied.

  “Did you count at all in your head?” asked Howard, referring to a calming strategy they had learned to help Carly sit quietly.

  “yes”

  A few weeks later, Howard reminded Carly that she had to write a letter to the teacher to give her feedback about finally being allowed to attend a mainstream school. With a bowl of chips as her encouragement (why isn’t Carly three hundred pounds?), she girded herself for the task of typing out a letter to her new teacher.

  Dear Ms. Liko,

  I would first like to say thank you for giving me an amazing opportunity to be a part of your class. I enjoyed listening to all the presentations today. Howard pointed out that I had my back to the presenter. I am sorry about that but I have a hard time processing overwhelming visual input for long periods of time. I will try to work on it.

  I haven’t decided on my topic for the assignment however I have a few ideas. I would also like to thank you for talking directly to me. A lot of people stop talking to me or start talking to Howard because I don’t look directly at people, but I can promise you that I’m listening.