I write from time to time about my daughter Ellie. She's twelve and autistic, and a pretty amazing kid.
She has a website:
where I showcase her many artistic endeavors.
Today I wanted to write about communication. Always a thorny issue for autistic kids. And adults!
Ellie’s first words were ABCs and 123s. She started counting and reciting the alphabet right around the time she was supposed to be “talking”. It was right around the time the doctor starts to ask you, “Does she use any words?” This is considered screening for autism and other developmental delays.
“Sure,” I answered. “She’s using words.” I mean, the alphabet is 26 words, right? Count to twenty and that 20 more words! That’s 46 words!
What they should have been asking me, of course, is “Is she communicating?”
It’s a common misconception that autistic kids don’t speak. Most of them speak plenty. What they don’t do is communicate. In fact, I’ve always been confused by the term “non-verbal”, which you hear bandied about frequently in the autism community. I personally have never met a fully non-verbal autistic person. They usually recite lines from their favorite shows, or sing songs, or sometimes just shout out nonsensical things. Ellie used to shout, “It’s a purple party!”
But compare these to Nikos’ first word (Hi) and Lilia’s first word (wanna – oh boy that one is fraught with connotations but I’m not going there) and you can see that my other children were using words to communicate and Ellie was not.
At about age 4 we started to hear “yes” and “no”. That was exciting. That meant that she was trying to tell us her needs and desires. Previous to that we were just guessing and/or offering her random stuff to see what she wanted. The problem was that she didn’t entirely understand the meaning of “yes” and “no” and got confused a lot. This let to a lot of confusion on our part, as you can well imagine. But it was a step in the right direction.
Next came the firm use of “yes” and “no”, which was glorious. It meant we could ask her virtually anything, as long as it was a yes/no question. We couldn’t ask her, “What do you want for dinner?” but we could ask her, “Do you want stir fry for dinner?” and she would answer with her trademark honesty. Autistic people can not tell a lie; perhaps that was George Washington’s problem, I’m not going to speculate on that.
The drawback to this system of communication is that we were constantly guessing what she wanted or didn’t want. If you didn’t present her with the correct option, she couldn’t say “yes” to it. So if she had an intense craving for beef stroganoff for dinner and I wasn’t offering her that option we would all get frustrated.
The most difficult issues were figuring out what was upsetting her, usually when we were out and about. The things which upset Ellie are not always observable to other humans. It could be a boy across the playground drumming his fingers on a slide. It could be a kid’s high pitched humming out in the hallway at school. Using yes/no questions in those situations is almost impossible, but you could follow her cues. Blocking her ears, drumming her fingers in an angry way, these were clues as to what was going on. It’s a form of communication, just not a spoken one.
That led us to the wonderous use of words. “Stop singing” is a big one in her repertoire. Sometimes I sing deliberately just to get her to talk to me. She’ll tell us what she wants for dinner now with her own words. “Chicken, rice and broccoli” is her favorite.
Still, her communication was very immediate and concrete. What’s bothering her. What she wants at that precise moment. There was no future or past for Ellie. I asked her questions about how her day went or what she did in school or where she wanted to go tomorrow because I knew one day she would start speaking about the past and the future.
The future came first. It’s easier because you can pull out a calendar and say, “Friday we’re going to the ballet. Do you want to go to the ballet?”
Another good one is, “Do you want to go to the pool?”
“Do you want to go later?
“When to you want to go?”
She really means it. If you find her in 30 minutes, and tell her it’s time to get on her swimsuit, she will happily oblige you.
Forward to the past–the past is much trickier. It’s a harder concept, and verbally it’s more complicated as well. She’s starting to get it.
She had a field day at school last week. When she got home, I asked her, “Ellie, what did you do at field day?”
She looked at me for a long while. I could see the gears right behind her eyes grinding away. She was working so hard to work out what I meant, and how to communicate to me what she had done earlier in the day.
Finally, she said “bat”. She looked very pleased with herself.
“You played with a bat?” I asked her.
“Yes,” she said.
Never has a small word like bat held so much significance.