Tuesday, March 27th, 2012
After I met Margaret Ericsdottir, mom of Keli, the boy with nonverbal autism who inspired Kate Winslet’s new book The Golden Hat: Talking Back to Autism, I heard from another mother of an extraordinary child. Tammy Starr’s daughter is 17-year-old Carly Fleischmann, who’s pretty famous in the world of autism. Carly’s on Facebook (30,461 likes) and Twitter (22,932 followers), and has been on TV shows including “20/20” and “The Talk.” She’s also been featured on “Ellen” a few times; Ellen DeGeneres even recorded Carly’s bat mitzvah speech—thanks to some hardcore networking by Tammy—which was played for a blown-away crowd.
Now, everyone has the chance to get to know Carly and her family better. Her father’s book, Carly’s Voice: Breaking Through Autism, comes out today. Arthur Fleischmann’s breathtaking account of what it’s like to have a child with a disability isn’t an easy book to summarize, because Carly’s story—actually, Carly herself—is so layered. But here’s the short(ish) version: Around the time Carly was 1, her parents realized that she and her twin, Taryn, were progressing at different rates, moving in different directions. (The Fleischmanns’ son, Matthew, was about 6 at the time.) At age 2, Carly was diagnosed with autism. The next several years were, at times, excruciating: “This was not a life but a slow demise,” Arthur writes. Carly couldn’t speak; she had frequent tantrums; she’d repeatedly and violently bang her head; she’d make bleating sounds; she often couldn’t control her bladder. “Just let me get through one more night,” Arthur would lament. As he writes, “We had become masters of surviving Carly.”
And then when Carly was 10, the years of incredibly intense and devoted therapy offered a shocking reward: Carly typed a message to her therapists. To everyone’s astonishment, it turned out that the child who was believed to have very little going on in her brain, who was indeed considered mildly retarded, turned out to be not only smart but eloquent, witty, even sarcastic. I was struck when Arthur wrote, “I don’t think I will ever fully reconcile the dissonance between Carly’s intelligence and actions. It’s been six years that she’s been writing and with each epistle, I’m still left somewhat speechless myself.” The fact that Carly could communicate had one downside—it meant she’d understood everything that had been said in her presence. As she puts it, “You know how people talk behind people’s backs? Well, with me, they talk in front of my back.”
Arthur Fleischmann does not flinch from even the darkest moments in their journey, and there is one particularly horrible period when Carly lives away from home. At times he’s able to approach their situation with humor, like when he described a family party that only served to make them feel like outsiders: “It seemed like everything about us was just weird. Our Portuguese water dog hated to get wet, our cat was on antidepressants for ‘inappropriate urination,’ and attending family events was work, not pleasure.”
The book ends with Carly’s own words, and her explanation of what it feels like—emotionally and physically—to have autism is eye-opening. Quite frankly, I think this chapter should be required reading for our society, especially as we head into Autism Awareness Month. You’ll never think of someone with autism the same way again.Add a Comment