Autism, which affects one in 88 children, is the fastest-growing developmental disability in the United States. Autism spectrum disorders consist of a range of neurological disorders characterized by challenges with both verbal and nonverbal communication, difficulties with social interaction and repeated behaviors. There is no cure for the disability, but new technologies help people like Carly Fleischmann bring awareness to autism with their stories and improve their lives through enhanced communication.
Arthur Fleischmann '84 wrote a book published in 2012 about his daughter, Carly, who was diagnosed with autism when she was two years old. After an appearance on 20/20 during which he told part of Carly's story, Fleischmann was encouraged to narrate his family's experiences with their daughter's autism, which he did from his point of view in Carly's Voice. The book's title is a nod to the way her story reaches people who do not necessarily understand her disorder, as well as people who live with it. In addition to autism, her developmental delay and oral-motor apraxia make her unable to speak. Through technology and this book, however, Carly has gained another form of communication.
Carly, now 18, lives with her parents, her twin sister Taryn and their older brother Matthew, who is 23. She enjoys typical teenage activities like listening to music, being with friends, reading books and seeing movies, but "she finds crowds to be challenging, so going to malls or that sort of thing can be very hard on her," Fleischmann said in an interview with the Justice.
"She has a pretty ... programmed life because repetition and routine works out much better for her than surprises or variation."
According to Fleischmann, Carly's greatest challenge is Obsessive Compulsive Disorder, an anxiety-based disorder which "makes her do things that she knows are wrong ... like feeling like she has to shred something up or empty an entire container of something. If she doesn't do what her body craves doing, she says it actually causes her physical pain," Fleischmann said. Because of the pain, she reacts with shrieking and pounding her fists at times. Carly employs meditation, relaxation and yoga to help control her OCD.
Besides her difficulty with OCD, Carly also struggles with daily habits that others take for granted, including typing, which she does slowly with one finger. She works with an occupational therapist to help her with some basic motor skills, like tying her shoes and preparing snacks. Carly feels, however, "like someone always has to supervise her, help her, shadow her," through her routine.
"[While] she still has a number of physical and behavioral challenges, intellectually she has no challenges. In fact, she is highly intelligent. Her last IQ test put her somewhere between 120 and 130," Fleischmann said.
Carly has made such progress academically that she was recently accepted to the University of Toronto, where she will be working toward a Bachelor of Arts in the fall.
Carly has attended a range of schools, from public schools, to private schools, to schools specifically for people with autism. Carly prefers not to attend schools for autistic individuals, however, because she does not want autism to define her, according to Fleischmann. She performs well in the classes she takes, but she is unable to take certain math and science classes because she cannot grip a pen, although she has demonstrated that she can solve problems in her head.
Carly has a clear understanding of her condition. A few years ago, Fleischmann's wife, Tammy, asked Carly if she knew what autism was, to which Carly typed, "it's something I have that other people don't like to see." Fleischmann says she types how she feels about the disorder and says she feels "like her body traps her and doesn't let her do the things that she wants to do."
Facebook and Twitter have been essential outlets for Carly to express how she feels about her disorder, as she has not developed any spoken communication. Her Facebook page currently has over 93,000 likes and she has over 43,000 followers on Twitter. Her posts include messages such as "Just because words don't come out of your mouth doesn't mean we have nothing to say" and "I am off to Washington DC on Monday and I'm trying to get some meetings with some senators. Elizabeth Warren has agreed to sit down with me and talk autism."
The technology Carly uses to communicate on a daily basis with her family, therapist and peers changes constantly. At first, the family was unaware that Carly could access words. They used picture cards to understand what Carly wanted to say, but then discovered she could write. Now, she uses programs that are always evolving, including apps on the iPad with preprogrammed phrases that read out loud with the press of a button, which works especially well in an academic environment with other students.
"I think she likes the fact that somebody with a disability who was told would never communicate, would never have a life outside a group home, has this ability to communicate and inspire so

many people around the world," Fleischmann said.
Because of her love for expressing herself in writing, Fleischmann asked Carly about the idea of writing her story in a book. She thought it was a good idea because while articles and blogs are a few hundred words, they both thought a book could tell their whole story including both hardships and breakthroughs.
There are some parts of her autism that Fleischmann knows Carly appreciates, like the ways she thinks, hears and sees, including her photographic memory, "which she would never give up," according to Fleischmann. Another part of her autism that empowers Carly is her ability to show people who she really is and what she can do. "She likes surprising people. People look at her and assume she is incapable, and then she does these things that are so awe-inspiring, and I think she likes that ability to shock people," Fleischmann said.
Fleischmann said he has the greatest aspirations for his daughter. "Carly doesn't need any help coming up with visions and plans and dreams. While some teenagers need direction and encouragement, she is a very hardworking, self-directed kid."