The last statistics that I read reported that about 45% of autistic children will remain non-verbal throughout their lives. Out of the percent that do speak, only about half of those will be able to hold a real conversation with another person. That is really a small percentage of autistic people that will actually use words to express their needs and wants. That is a small population of autistic people that will use their voice to communicate.
Speaking and communicating are two different things.
Sir Dantes is now five years old. One of my biggest wishes in this world is to hear him say, "I love you mommy". Will that happen? Well, maybe. Up until the last few weeks Sir Dantes only has used his voice to laugh, cry, scream, or make various noises.
We had pretty much decided that he would be in the 45% or so that never speaks. We knew, however, that we had to find a way to communicate with him. We learned sign language and bought him an Ipod and downloaded it with all sorts of communication applications.
Over that time we have had some limited success. He knows his signs; but, he doesn't use them to express himself. He repeats them back. "Sir Dantes, show me the sign for sun", I will say and he will do it. Any words I ask him the sign for he will show me. But, he will not use them to "say" anything. While the Ipod entertains him, he will not use the applications to tell us anything. So, I fear the same pattern is emerging with speech.
Our long-time readers know how badly I want Sir Dantes to talk. Last year when he turned four I had set a goal that he would be speaking before his fifth birthday. Well, guess what! He is saying some words now: ball, cars, all done, da da, bye, and ax ee (Maxie, his big sister). Yeah! Fantastic! Fantastic? Maybe and maybe not. Why? Well, he is only repeating them.
Don't get me wrong. I am tickled pink that he is learning to use his voice. To hear his voice say a word is amazing and nearly brings me to tears. What worries me is that he is only repeating the words when we ask him to say them; just like the signs. He has not grabbed a ball and said, "ball". He has not finished doing something and said "all done". He has only repeated the word back to us when we have asked him to say it. Do we have a parrot on our hands?
Perhaps it is to early to tell. After all, the words have only been coming out over that last week or so. And, it is a start.
Today at work I had to discuss an account with one of our residents who works with autistic adults at a half-way home. This home houses a few adults that have autism, live there and have jobs, but still need full-time supervision. Every time this gentleman comes into my office he ask me about Sir Dantes. I was happy to share this latest success concerning our son with him, but I told him that I hoped that he wouldn't be a parrot; just repeating words or phrases. I told him that I would rather Sir Dantes remain non-verbal than be a parrot. He looked at me sideways. Am I bad for that?
All day I have had images of Dustin Hoffman's character from "Rainman" in my head. A smart fellow mainly repeating phrases and only answering questions with simple, one-word statements. That is not communication. I need to get this image out of my head. Right now I wish I'd never seen that movie. I want to be able to celebrate more this break through. I want it to lead to real conversation to know what it is that he is thinking, what he wants, what he needs. I don't want him just repeating words and phrases for the sake of nothing.
I need to give it more time. We are climbing those stairs again. Take care tonight.
Anyways, it wasnt until my son was 6 that he finally started telling me he love me...at first after I would say it to him kinda like I love you too mom. But eventually he started saying it independently. Just a few weeks ago, he came early in the morning to my bed and touch my head and said "I love you mommy"...and for me that was heaven. In the past six months he has started talking a lot more. I am now able to have "conversations" with him (mainly about dinasaurs which he is obssessed with). Of course, he is just learning to put his ideas in sentences...and even though for me he is speaking like crazy, according to the speech therapist he is not even in the 1% curve compared to kids his age. But I dont care...I can finally have a mini conversation with my son...and I will take it. Dont give up. My son is 7 like I said before...but when he was Sir Dantes' age he was around the same. Dont give up hope!
Karla, as I read your comment to my wife last night I had tears in my eyes. We know exactly what you're talking about. I'm in the same boat as your husband. I just wish I could have a conversation with my son too.
Yesterday morning, as my son was leaving for school, Mama said, "I love you!" to him. Braden spouted, "Too!" That's his way of piggy-backing on your words. Instead of saying, "I love you too" he only says, "Too."
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