This is Carly Fleischmann:
According to an article written by her father, Arthur Fleischmann, Carly was diagnosed with autism, developmental delay, and oral-motor apraxia (“a neurological condition preventing speech”) by the time she was two-years-old. Carly underwent years of therapy, which eventually allowed her to walk, stand, and feed herself. Unfortunately, Carly showed no hope of ever being able to communicate. In fact, her behaviour made it seem as though Carly would have nothing to communicate even if she could express herself:
“Carly went to therapy sessions, bleated, screamed and never ever stopped moving. Her actions were feral and, if not tightly monitored, destructive. Left unattended, she emptied containers of baby powder, smeared peanut butter on the furniture and overflowed bathtubs. One evening she slipped out of the house at dusk and crossed four city blocks before we found her stripped naked at her favourite park.”
Then, one day, something changed. Carly spoke. Just not in the way you might expect. The video below reveals how Carly turned to typing in order to express the feelings she could not communicate verbally.
After Carly found her “voice” she had to work hard just to use it, since she could only type using her index finger on her right hand. For weeks leading up to her b’not mitzvah in January 2008, Carly toiled over writing her speech. Once it was finally complete, her mother appealed to someone Carly admired to read it out for her: Ellen Degeneres.
The night of her b’not mitzvah Carly’s family played Carly’s pre-recorded speech read by Ellen. One of the most poignant parts of her speech was her description of what it feels like to be severely autistic.
“I know I might act or look silly to some of you, but I have autism that makes me act this way. A lot of kids and older people have autism, too. I am not the only one. Autism is hard because you want to act one way but you can’t always do that. It’s sad because people don’t know that sometimes I can’t stop myself and they get mad at me.”
On her website, Carly’s Voice, she explains further what it feels like to be trapped in a body you can’t control.
While Carly can’t necessarily explain how every child with autism feels, her blog gives insight to what they might be feeling, especially when they engage in the kind of behaviour we often perceive as socially unacceptable, or even dangerous. One of the first things you learn when studying about autism is that many of these behaviours are coping mechanisms to deal with hyper or hyposensitivities. A hypersensitivity means that a certain sense is more sensitive than that same sense in a typical individual. A hyposensitivity is the exact opposite; it means they are lacking sensitivity in a certain area.
In the FAQ page of her website, Carly answers questions from fans. Many of these questions deal directly with the hyper/hyposensitivities often found in individuals with autism. For example, a child who screams when they are hugged or touched may have a tactile hypersensitivity. Some individuals with autism have described being touched as something akin to being cut or hurt. Given this context, their reaction (screaming/pulling away) seems pretty sensible.
Another type of behaviour that is typical of individuals with autism is avoiding eye contact. Carly describes this visual hypersensitivity as well. She says, “I take over a thousand pictures of a [sic] persons face when i look at them […] All the images come at us at once. It is so overwhelming.”
This particular type of sensitivity has also been described by autism trailblazer Temple Grandin. It was also demonstrated pretty effectively in the film rendition of Grandin’s life.
While Grandin’s life and work are an inspiration for the autism community, Carly has brought something new into the light. As you may have already realized (if you watched the videos above) Carly’s family thought she was not only non-verbal, but also mentally absent. Her father even admits they would discuss Carly’s behaviour in front of her because they didn’t realize she could understand them.
Carly was trapped inside a body that was often out of her control, with no way to communicate to those around her in order to at least gain some power over her surroundings.
Typing has given Carly a way to communicate, and gain more agency than she ever could have imagined. With that new power, she has chosen to become a spokesperson for the autistic community. While Carly’s personal experience isn’t the same as every individual with autism, her “voice” has helped shift the way we look at nonverbal individuals. It also helps us realize how important it is to give as much support as possible to families with autistic children, especially in cases where the families have almost given up hope.