Monthly Archives: October 2013

How Do You Talk to a Nonverbal Person with Autism?


 Guest Post
By Tracy Kedar (my mom)
“High five, Ido,” the earnest young woman said, greeting my son for the first time as they were about to work together. “Uh-oh,” I thought, “bad start.” “Good job. High five,” she said to him over and over.
Ido has nonverbal autism and can’t speak. At that moment, due to the nature of the activity, he did not have immediate access to his letterboard or iPad, so he had no means to tell the nice, well-meaning young woman that he hates being told, “high five,” and “good job,” and that he hates being spoken to as if he were three (he is seventeen), and to please talk normally to him.
I thought, “Okay, say something now before this becomes a pattern and he becomes insulted.” As tactfully as I could, I mentioned to her that Ido doesn’t like “high five.” He wants to be spoken to normally. “But this is how I talk to everyone,” she replied.
Really? She goes to a party, walks up to her friend, or the attractive young man she wants to meet, lifts her palm and says, “high five” in that particular tone of voice?  She palm-slaps friends she passes at work, the cashier in the market, her doctor? I didn’t think so. Perhaps if she hung out exclusively with two year olds she talked to everyone like this. Otherwise, let’s assume she gives people with autism or other special needs, special communication. 
My son, Ido Kedar, is a high school junior, and despite his severe nonverbal autism, he is the author of a book, Ido in Autismland; Climbing Out of Autism’s Silent Prison, is a blogger, is an honors fulltime general education high school student, and is a frequent guest lecturer at universities and autism conferences. His vocabulary is huge, his intellect, fully intact.
Knowing this, or even a small bit of this, I had to wonder, why would anyone talk to Ido in this infantile manner? Why talk to anybodylike this? The answer is that many people with special education training have been programmed to believe that autistic people need speech broken down to simple components to help deal with the assumed receptive language or cognitive delay. Talking in this way is deeply habituated for many people who assume it is the right thing to do for every person with special needs. Otherwise, why say, “high five, good job,” instead of, “excellent effort. That was outstanding.” Hear the difference? Autistic people do too.
Recently, Ido had an unexpected encounter with a professional who spoke to him like this; “He knows I know he’s smart, right, bud? We’ve got a thing, right, bud?” Enduring a situation he found pointless and patronizing and which pulled him away from an academic class which mattered to him, Ido stewed and finally replied as an irate teenager would and typed, “F—  this.”
The question is, would this professional talk to any other high school student like this, let alone a high achieving honors student? We all know the answer is no. Professionals too often talk aboutthe person (“He knows…”) and not tothe person (“You know…”).  They talk in childish tones and reduced vocabulary. The message is, “I say I know you’re smart but I treat you like I think you’re not.” To which Ido says, “Enough!”
In his book, Ido inAutismland, Ido wrote in his essay, How I Would Have Liked to Have Been Taught,
If I could educate the specialists, the first thing I’d recommend is to talk normally to autistic kids. No more, “Go car,” “Close door,” “Hands quiet,” or the like. It’s stupid to talk this way. Some teachers used tones to make words more distinct or over-enunciated sounds, like “letter” made with a “t” sound, not a “d” sound like we use in America. They sounded so silly I often rolled my eyes inside. (p 55)
When Ido was little, before he could type and we didn’t know what was locked inside, we used to speak to him in this simplified way, as we had been instructed to by autism professionals. We went through a terrible episode when he was small when he grunted continuously every few seconds all day long. He couldn’t stop and we tried all the traditional behavioral techniques of extinction, or telling him, “no,” or “mouth quiet,” to no avail. Finally, in desperation, I told him in totally normal language before a car drive that his grunting was distracting to me while I drove and I told him that he needed to make every effort to not do it for the duration of the drive. To my amazement, he did. From that point on, even before he had communication output, I gave him the benefit of the doubt and the respect of normal communication input.
Regularly, Ido gets letters from parents telling him that they now speak normally to their child with autism, thanks to his advice, and that their child is responding positively. Ido has asked professionals to ponder, if you had duct tape over your mouth and around your hands, would that mean you couldn’t understand speech? How would you like people to talk to you if you were in that situation? How do you talk to a nonverbal autistic person?

Valuing Your Education


My Spanish teacher had a meltdown in class a few weeks ago. Lots of kids were rude and disrespectful to her. She said, “I quit,” sat down and did nothing. After that, until I got switched to another Spanish class, we had subs. I actually wanted to learn Spanish and she was nice to me so I felt disappointed when this happened. She burned out in front of us. 
I have been wondering why the students in that class had such terrible attitudes. I realize some have difficult home lives or have homes that don’t focus on learning, but to me the indifference to learning is puzzling. In my case, I fought so hard to be allowed to learn and to have a career one day. How come they waste their chance to get an education? It makes me very sad because the kids are decent people. They are nice to me and treat me with decency, but they are not nice to the teacher and don’t respect her. But I think even sadder is their lack of respect for their own futures. I think they can’t imagine that better things will come if they try.
I was imprisoned by my body and trapped with no education in school year after year when I was small. I know that an education is a gift, but they feel it is a prison. I wish I could help them to see how to value it.

Silent Fighters

Me, Carly, Tito, Elizabeth, Naoki.
Who are we? Silent fighters, that’s who. I love the flood of books by nonverbal autistic people. It is time to be advocating for ourselves. Why forever must the theories of scholars be listened to over the people with autism themselves?
Is it possible Ivar Lovaas or Bruno Bettelheim knows autism better than I do?
The momentum is beginning. Here we come!