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 anybody
like 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 about
the person (“He knows…”) and not to
the 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 in
Autismland, 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?
