They were an enthusiastic audience, this group of second-graders who spend part of each school day with my son -- these kids who know very well how different Daniel is and wonder why. As I moved from their most fundamental questions -- was he born with autism; why doesn't he talk -- to those focused on his behavioral characteristics, I wondered if I could even begin to explain the things that are so mysterious to me.
I "know" Daniel better than anyone else "knows" Daniel. To know Daniel is to worry in immeasurable amounts, to accept that love transcends words, and to wonder about all the things you can't really know. When you think about it, you can say the same for all of our most treasured relationships. Autism just makes relationships so much more complicated, because -- and I speak for myself here -- it leaves you longing for the opportunity to communicate with your child in the typical ways that bond people together.
Just as Daniel is complicated, so is knowing him ....
... although he is so worth knowing.
So I did my best.
Why does he want to spin things?
Here is what I think: this world filled with words is tough for people with autism in a lot of ways. You guys are so good at talking, and when you are talking with somebody, you are really good at being able to tell how that person is feeling and what they might want to talk about next. People with autism are good a lot of things, but that kind of stuff is hard for them. So, I think they take comfort in things that are predictable to them.
And we all do that sometimes. I will give you an example. Do you guys have a favorite movie?
(Yep, they did.)
How many of you have watched you favorite movie more than once?
(Well, duh, they all had.)
More than twice?
(Yep. The hands stayed up.)
More than five times?
How many of you think you have watched your favorite movie more than TEN times?
(They all looked around the room at each other, and they all seemed to be on the same track. These kids really liked their favorite movies.)
So, even though you know everything that is going to happen in that movie,even though you can probably repeat lots of it word-for-word, you still like to watch it.
And I bet that when you guys aren't feeling well, you'd probably like to just sit on the couch and watch your favorite movie, even though you have seen it so many times. Even though you know that whole movie by heart, watching it brings you comfort. It is familiar to you.
Well, its the same for Daniel: things that are very familiar to him bring him comfort. He knows that when he picks up a lid, or something else that spins, he can make that lid spin every single time by doing the same thing each time. It is predictable. It is easy to understand. And when he is spinning a lid, he can get lost in it, and he sometimes will tune out the world around him – just like you guys tune out the world sometimes when you are watching your favorite movie or TV show.
Why does he grunt and say uh?
Do you guys mean when he kind of screams like this: AAAHHH!
(Yep, they did)
You guys have noticed that sometimes Daniel can make a lot of noise. And sometimes, I bet, all this noise really surprises you! It surprises me, too. I can be sitting in Chic-fil-a with Daniel and he will see a picture of ice cream on the wall, and he will shout "AAHH" so loudly that I nearly fall out of my seat onto the floor!
But even though all that noise can really startle me, it is also exciting, and here is why: Daniel hasn't always used his voice box to get attention. When he was younger, whenever he wanted something, he would either try to get it all by himself or he would come and find me, take my hand, and lead me to whatever he wanted. And he would put my hand on what he wanted to show me. Now, he is really trying to use sounds to get peoples' attention. But it is hard for him.
I want you to try something with me. I want everyone to make the "t" sound. Like this. Now I want you to think about all the things your mouth is doing when you make that sound. Your tongue is going up to the roof of your mouth, right? And what else?
("My mouth goes tight, kinda like I am smiling," says one child. "And I am blowing air out of my mouth," says another.)
That's right! And you have to do all that stuff just to make ONE SOUND!
Well, remember those roadblocks we just talked about? They are making it really hard for Daniel's mouth and tongue and lips to do all that stuff. So, right now, he is making the sounds that come easiest to him. And he really wants to be sure he gets your attention, even though he can't say things the right way, so he is LOUD!
When he really slows down and tries hard, he can make a lot more sounds and he can say some words. I am hoping that some day he will be able to say a lot more, and that he will use a machine to help him with the words he has trouble saying ...
UP NEXT: the last of their questions and the ways that Daniel is so much like them.