Back when we were first trying to understand what was happening with Isaac; that is to say, when I was in what you might reasonably call denial, I read The Einstein Syndrome. The idea was that some percentage of late-talking children--who have behaviors that mimic those of autism--don't actually have autism. The book goes into some detail about Einstein's brain--about how the part of the brain that governs analytical ability was so overdeveloped that it crowded out the part of the brain that governs speech. And so Einstein didn't speak until he was four.
It was, very possibly, a decent theory.
It was, just as likely, pseudoscience.
It was, very definitely, an exercise in hairsplitting.
I joined a "late-talkers" board and stayed up into the wee hours chatting online with like-minded parents. Our kids didn't have autism. They were just late talkers. Analytical. Smart. Good with numbers. Never mind that they flapped, they toe-walked, they stimmed, they ignored their peers. This was just a by-product of their GIANT BRAINS and their difficulty communicating. Oh, and some sensory issues.
I met one of these women when she came into town. She brought her son, who, I realize now, was almost certainly on the spectrum. She was very sweet, and drank tea in my dining room as her son watched videos in the front. She played with Isaac. She said he reminded her of her son at his age. When she left, I went to bed and wrapped the blankets tight around me.
Not long after, I bought Susan Senator's book. It was time.
I started this blog in February 2007. The day after I started it, I left a note on the late talkers' board in case anyone wanted to read or comment. The next time I tried to log onto the board, I couldn't. My login was invalid.
I sent a note to the moderator--that same woman who had visited my house a few months before. I asked her if she wouldn't mind resetting my login, as it hadn't worked that morning. She told me she'd revoked it because my blog was full of resources related to autism. Why, she asked, would I want to be part of a late talkers board if my child had autism?
I was so afraid of that word then, of everything it represented. Starting this blog has been a process of making peace in my own way; not simply with my son's differences, but of what they meant. Or what I thought they meant.
Today, J. took Isaac for pizza. The server, J. said, looked like Ronaldinho. Isaac watched him with interest as he prepared the pizza, served it, and then walked into the back of the store. "She's going into the back!" Isaac told J excitedly. "Isaac, he's a boy. He just has a ponytail," J. responded in an embarrassed whisper. "I want to go into the back," Isaac demanded, and then, after a moment, "We can't go into the back. We don't work here."
J allowed that that was true. Isaac took a few more bites of pizza, paused, and leaned into J conspiratorially. "Let's work here!" he suggested slyly.
I am amazed, ashamed even, when I remember how hard it was to accept Isaac's diagnosis. "It gets better," people would tell me, and in my grief and confusion, I discounted what they said. I thought that meant they had settled for reduced expectations, for a sad, constrained sort of life. I thought they were humoring me, so I would be able, like them, to wake up each morning and put one foot in front of the other.
But when I think about what autism has really come to mean in our lives, about everything we've learned, I feel a sort of gratitude. For pancake breakfasts, and kisses, and silly games, for sly comments and fart jokes and the simple pleasure of his company.
I don't mean to candy-coat it. It's not always easy, and it's tougher for some than for others. But there is joy too, and peace, and grace.
Don't be afraid.