A Picture is Worth a Thousand Words

I had the most interesting talk with Sam tonight about what it means to him to have autism. The talk almost made me break down in tears. Let me show you why.

At age 3 Sam had no communication, except to pull us to where he wanted us to do something. So if we were pulled to the refrigerator, we had no idea what he wanted out of it. And if we were pulled to the tv, we didn't know which video he wanted.

At age 4 he was beginning to use PECS (picture exchange communication system) and sign. He would use a picture or a gesture to simply ask for what he wanted. Pizza, ice cream, Blues Clues.

At age 5 he broke his arm, but he didn't have enough language to tell us what had happened or where it hurt. It was several hours before we were able to adequately interpret his body language to understand it was his arm that hurt and get his x-ray.

Since then his language has been developing. It has been mostly very concrete--I want to eat this, I want to watch that. He has a great deal of trouble talking about past and future. To imagine "what if." Last year in reading class, his teacher asked him if he would want a character (Prince Brat) to be his friend. "Emily is my friend." He couldn't imagine the world as 'other.'

Tonight's conversation was very halting and I have edited for brevity. But it was very illuminating about what his world is like to him. I recorded a great deal of the conversation so that I would not forget it.

I asked him "what does autism mean for you? "Autism means not pretending. It means using your own words and thoughts. And it means it's hard to talk." "Sometimes it's hard for me to do my homework. It is not easy for me. I have trouble understanding."

I told him that "I have noticed that sometimes you have trouble getting your words out. Why is that?" He told me "It is hard to speak. It is hard to get the English words out that I could speak out." "Autism means trouble paying attention. And some people with autism cannot understand what exactly is going on with words." I asked him what they should do about that. "Well, they have to use their brains to think."

After about 15 minutes of this very difficult conversation, Sam started to try to get off topic. I didn't blame him. It was very hard work! But I pointed out to him what he was doing. He was trying to convert to a topic he was very comfortable with, which is 'What is silly?' He tried it twice and I told him "we can talk about silly when we get into the city limits of our town." And he got back on topic. Wow.

We talked about Nathan and his troubles, and he told me how he would handle him. He told me "Nathan talks like this" and mimicked Nathan quite well when he stim talks. "But I will get him calmed down and then he will be able to talk like this...."

And unprompted he said "Isaac does not have autism." 'Not at all?', I asked. "No. But he is a bully!" And we talked about what a pest Isaac can be.

I told him I had heard an autistic lady say she thought in pictures, but many people thought mostly in words. I asked him whether he thought in pictures or words. He thought for a moment. "I think in pictures."

I asked Sam if he would want the Prince as his friend. He said "Not Prince Brat, but I would like the good Prince!"

It was an amazing conversation. I cannot tell you how unexpected it was, and how proud I am of him. We have far to go, but we have come so far.

It is no wonder it takes him so much effort to talk. A picture is worth a thousand words. And it's hard to get the English words out.