About Not Talking
November 19, 2007 by Kristina Chew, PhD
Filed under Health
Autism will be the topic of tonight’s Anderson Cooper 360 at 10pm on CNN.
I used to think silence was the enemy, and getting my son to talk the battle of our lives.
My husband Jim and are both very verbal and it seemed a deep irony that Charlie, then aged two, did not talk. Charlie learned to talk slowly: First we had to teach him to associate signs and then sounds with speech; he then had to learn to say the numerous sounds of language. Charlie was 7 when he was finally able to say the “ch” sound for his name, and he still has to think to get the “l” sound in (instead of a “w” sound). Sometimes he says an “sh” sound instead of the “ch” in saying his name: This is a vestige of earlier attempts to have him say “Shar-ee” when he just could not say that initial “ch.” Over these years, there has still been a lot of silence. Charlie can talk, but he does not say a lot of words at a time, and his articulation is not always clear to anyone but Jim and me. We converse in exchanges of one and two and sometimes more words, about the basics of food, where we’re going, clothes and hand-washing and where Charlie’s favorite objects and people are. Often, especially when we’re in the car, we turn on CD’s and let the music say it all.
Bev at Asperger 8 recently posted about choosing to talk sometimes and, at other times, choosing not to.
It is important to acknowledge that no matter how hard you try you may not know the reason for the disappearance of speech. In some cases, I won’t be able to figure it out for myself and there may truly be no better answer to the question than “I am autistic.” Furthermore, I may know the answer, but not want to tell you. That is my right. If you are able to understand and respect these things, there is a chance I will want to talk to you, though it will still be difficult.
There’s just as much a time not to talk as there is to talk, and silence offers its own kind of communication. Talking is just not easy for Charlie, for the reasons that Bev explains, and also because it’s a combined physical and neurological effort for him to speak. Charlie has been learning to type at school; we’re always hopeful of new ways for him to express himself, and I’m ever ready to learn to listen.
We’re ever inspired by DJ Savarese, who will appear on CNN tonight at 10pm with his parents, Ralph and Emily Saverese, in a segment on the one-hour special on Anderson Cooper 360. The program also features Amanda Baggs, artist Larry Bissonnette, and video from an autism conference in Edmonton.
Cool, I can’t miss this one. Plus Anderson Cooper is so much easier on the eye than Larry King.
Thank you in advance to Amanda Baggs and the Savarese family for spreading a message that ought to be just common sense in our society but is not.
I am glad that I caught this before the show tonight. I hope that it focuses on something that so many people just don’t understand. That the silence does not define them and that just because they do not say anything doesn’t mean they don’t have something incredible to share with us.
We don’t have a TV set so whatever you can tell me about it will be much appreciated! Silence can say plenty. I think. I’ve learned from Charlie.
As a neurotypical person who has used a wheelchair or electric scooter for all mobility for the past 24 years, and used a trach and ventilator for all breathing for the past two years, I find it interesting how closely Bev’s comments mirror my own experiences. I can speak past the trach, if a number of standards are met (not too phlemy, the trach cuff allows air to my vocal cords, etc). Often I need to sit forward and use a hand to gently position the angle of my trach in order to speak clearly. And often, if someone wants to speak with me, it’s not in my best interests to stop whatever I am doing, sit forward, brace my elbow so my hand can reach up to my throat, and then respond. Verbally telling someone “I can’t speak now” would still require all those movements, so often silence IS my response. Or I respond ten minutes later. Sometimes I’m considered rude for doing this, but those around me (typical breathers?) do not need to drop absolutely everything else in their lives to communicate. They would do what I do if that were true.
I thought the CNN program was good so far as it went, though the focus was heavily on Amanda and the segment was called “Finding Amanda,” which I thought was a ridiculous title. There’ll be more Friday, and I’m hoping to finding the transcript online eventually too.
I agree with Kay — some of the ‘wording’ ruffled me a bit. But it’s the best thing about autism I’ve ever seen on TV so I think it’s a start. Estee was on it for a second…that just made me so happy.
The wording had the same effect on me but one step at a time, yes?
Anderson Cooper 360 degrees/”Rush” transcript subject to change.
Inside the World of Autism 11/19/07–22:00ET
(starts about halfway down the page)
http://transcripts.cnn.com/TRANSCRIPTS/0711/19/acd.01.html
Is that segment a repeat from earlier this year?
I loved the show and look forward to the rest on Friday night. The wording really didn’t bother me. I think that words are left to interpretation and you have two segments of the population with different ideas of how to term all of these new ideas.
I think the whole”finding amanda” is not that she is lost, but that we as a neurotypical society are blinded by our own misguided perceptions of what “normal” is aka “autilsm”.
The title is more about us as a society being faced with a person that takes all of our pre-concieved opinions about autism and drops it on its head.
We have discovered Amanda, someone “odd” “different” and before technology would have considered “retarded” but now we know one does not equal the other.
Absoultely, Kristina. I would still say this program was a leap in the right direction.
Well put, tracey.