Guest blogger Helen Jonsen is a former editor at workingmother.com and Forbes.com who writes about health, finance, leadership and the intersection of life and work.
Using the social media tools Twitter and Facebook, Carly Fleishmann, a nonverbal severely autistic teenager, has broken down communication barriers to become the outspoken “voice” of autism.
In her blog, Carly’s Voice, the 17-year-old from Toronto writes about the disorder and other topics teenagers find interesting and she tweets on Twitter @CarlysVoice to more than 23,000 followers. Her Facebook page is an exchange where both autistic and non-autistic friends and strangers ask questions and comment. “I was asked if I get sick and tired of answering questions,” writes Carly. “The way I see it, how is anyone really going to know the truth about autism unless someone with autism talks about it?”
Carly’s world changed when, after years of intensive therapy, she had a major breakthrough. At age 10, when frustrated with her therapists, she painstakingly typed the letters: “HELP TEETH HURT.” At that moment it was clear she understood words, and could read and spell.
In a newly published book, Carly’s Voice, (Touchstone/Simon & Schuster) written by Carly’s dad with Carly, Arthur Fleishmann describes that breakthrough moment as a flurry of phone calls to him and his wife who were away on vacation with their other two children. They were stunned.
Before that day, it had been impossible for Carly to “tell” anyone what she felt, even when she was in pain. She had only communicated needs and tasks by pointing to picture cards. Returning home days later, the Fleischmanns labeled everything in the house. Carly typed when she wanted to. Physically, it was very demanding for her to sit still and concentrate on the physical act of typing, and it would depend on her mood.
But over time, she began to relish “her voice” and began to show a funny and sarcastic tone. At times, she’d make fun of her brother and use the colloquial expression: “Duh?” when annoyed.
At some point she began to IM Arthur at work, and then, as she prepared for her shared Bat Mitzvah with her twin sister, she wrote her speech but wanted talk show host Ellen DeGeneres to read it, to be Carly’s voice. That sent the family on a mission to connect the two. It worked – Ellen read the letter on video.
In the book, Arthur tempers those amazing moments with the mayhem of their lives. Carly was still hyperactive, had insomnia, threw tantrums and exhausted them all. She was on medication. She spent long days in therapy or school and part-time in residential care. Arthur describes their fears, his wife’s cancer–first diagnosed when Carly was two–their fights with school districts and relationships with other families and the individual therapists. The book’s video trailer has gotten thousands of hits on YouTube.
As for being so honest, Arthur said they have followed Carly’s lead, “Living with autism comes with its miraculous highs but also with its gut-wrenching lows. I wanted families who are caring for a child with any form of exceptionality to feel that they were not alone.”
Carly gives hope to other families that communicating with their seemingly unresponsive children may be worth every effort. In a tweet, a parent described how her child talks to her hands. Carly wrote back, “It’s actually a good thing.” And, “Tell her I say keep it up girl friend (sic).” She has explained to parents why their hypersensitive child hates clothing touching her skin (like she does) and that when she looks at someone, she’s overwhelmed by what she sees–“over a thousand pictures of a person’s face”–and looks away. According to her father, she has an almost-photographic memory.
What’s next?
Carly is attending mainstream high school where she works hard at staying in control. She told a Twitter follower: “I would like to work for Barack Obama in four years as I think it’s called ambassador for autism and get #Autism out in the open.”
She told me by email: “My story shows and proves that you can never say never and that parents need to believe.” And she is not giving up Twitter any time soon. As Carly would say, “Keep it up, girlfriend.”
CONNECT THE DOTS
You can read Carly’s Voice blog and watch videos of Carly answering questions via keyboard. In March, the Centers for Disease Control and Prevention (CDC) released its latest report on children with autism. Autism Speaks shares facts about autism, advocacy and awareness. Also check out these related Healthy Outlook Blog posts: “Smartphone Apps Address Autism,” “Can Genetic Testing Solve the Autism Puzzle?” and “Technology for Autistic Children.”
