Carly's voice

Still, there are days where one step forward is met with two back; I have not yet returned to the days of peaceful sleeps, awaking in laughter. That is the real price of autism. It’s not the money required for education, therapy, and staff. Or even the forgone opportunities. The real cost is the lack of security we feel in our lives together—as if we are perpetually stepping onto slick ice for the first time, never sure of our footing and what catastrophe may await us.

Carly’s words were a painful reminder that no matter how much effort it took for us to manage her life, it took twice as much for her to live it.

“What do you mean when you say you ‘take over a thousand pictures of a person’s face when I look at them’?” he asked. Carly had made this point a few times in recent months.
“It’s the way I describe how we see. All the images come at us at once. It is so overwhelming. When I was young, I couldn’t stare directly at things. I looked out the corner of my eye and even though you may think I wasn’t looking, I was,” she answered.

“Autism feels hard. It’s like being in a room with the stereo on full blast. It feels like my legs are on fire and over a million ants are climbing up my arms. It’s hard to be autistic because no one understands me. People just look at me and assume that I am dumb because I can’t talk or because I act differently than them. I think people get scared with things that look or seem different than them. It feels hard.”

Sitting at the large round table with my family, live music playing in the background, and the sun fading through the windows overlooking the shaded terrace, I realized I was actually having fun. Too often, events were to be gotten through—an accomplishment if completed without disaster.

Everything in our family was lived on extremes. When Carly was home, her presence was enormous and all-consuming. When she was gone, I felt empty and hollow. Carly’s intelligence far exceeded that of most kids, but her behavior was far below that of the mainstream. The polar extremes were exhausting. Our life was too black-and-white, and I yearned for some gray—some in-between.

We called this business of running Carly’s life Carly Inc. “The pay is lousy, but the benefits suck,” Tammy would say ironically.

Raising Carly was like renovating a home: an endless money drain for things that are as essential as good plumbing and wiring, but of little aesthetic or pleasurable value. Carly was still a long way from fluidly living a life like other children, and her development was not remarkable. She could neither speak nor dress herself properly, nor display any real skills that would make her independent.

Carly, however, was impossible to engage. Despite the fact that she never stopped moving, she didn’t do anything. Unless being guided through an activity by one of the therapists, Carly would lapse into one of two modes: sit and rock or run and destroy.