Friday, April 17, 2009

Forms of Communication

Autism is a diagnosis made by observation. Specific behavioral criteria are set forth in the DSM-IV-r and the ICD-10 that are used to define the disorder.
It has been my experience as someone who has now met numerous autistic people of many ages and, more specifically, is a parent to two young autistic boys, that any attempt to boil down such a vastly complex thing as human behavior to a 12-point checklist is an exercise in futility. At the same time, I respect the need to have a "neutral" description for autism that can be referenced universally.
Autism, moreover, is described now as a spectrum. By definition, this means that the Autism Spectrum Disorders include Autism Disorder, PDD-nos, Asperger's Syndrome, CDD, and Rhett's Disorder. I have come to recognize that 5 "classes" of ASD are probably not enough, though I think they satisfy clinical needs for the time being.
What I have come to realize over time is that mini-spectrums exist within each category that is used to describe autism. Here is the official list of diagnostic criteria for Autism from the DSM.
To illustrate my point, take item 1.a., which reads:
"marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction"

In the case of my older son, this category would describe his former tendency to emphasize use of peripheral vision over direct gaze. Or his habit of dropping small objects from his forehead down to the floor so they would rapidly pass through his field of vision. To this day, he still points using his middle finger (awkward in western society to be sure). He frequently touches people's faces to get their attention - a definite faux pas for someone over the age of 3 or 4. My youngest son does none of these things. Instead, he does things like walking with only one arm swinging in time with his gait. Or always averting his gaze when he is handing something to you, but stares right at you all other times. He regularly scrunches his cheek down towards his shoulder, his head askance. Point being, there is a huge range of things that classify as item 1.a. Exponentially apply that variance by a factor of 12, and you might begin to sense the range of autistic individuality.

Which leads me to a story about my oldest son, J. This story strikes me as a great example of how subtle, but at the same time stark, differences can be. This specific instance relates to communication.
J has armed himself with some pretty strong communication skills over time. But one must at times set aside convention when understanding J's particular way of approaching things.
Last week, my wife L was busy around the house when J approached her and tapped her on the shoulder. "What is it?" she said.
"Did you hear something?" cames J's reply.
"No - why, what do you hear?"
"I think it sounds like Thump-Thump-Thump!"
Puzzled now, L asked him where he had heard that. Where was it coming from?
J poked rapidly at his chest. "I think its my heart."
Mildly alarmed, L asked "J, honey, is your heart thumping? Are you okay?"
"I think its because I am nervous to tell you somefing."
*Sigh* "What do you want to tell me?"
"Well ..... tsk .... well .... IthinkItouchedthechairanditkindoffelloverinthekitchen!"
L, of course, was relieved on several levels that this minor thing was the cause of J's guilt trip.

Point being, this is a highly atypical and roundabout approach for a 7-year-old kid to take. But it is J's particular way to do it, and we embrace that. Time will tell how Baby C develops his own style of communication. No doubt it will be other than typical. Equally doubtless is that it will have his own personal stamp on it, and that we will strive to support him in his efforts to develop it.


Anonymous said...

4 kids? I could never do it. My hats off to you.


Maddy said...

Exactly. How apt. I am very touched by this piece. Beautifully translated. Thank you. Best wishes to you and yours from me and mine.

Sharon said...

Well done to J for getting his message across, that he knocked over a chair and felt guilty and a bit nervous about it.

It's always good to hear from you Steve.

Anonymous said...

Hey Steve,

Very well written..but you have always been a great communicator. You and L do a great job with all of your boys. I didn't know that C was also effected...I'm sorry. I know that L was worried about that when he was an infant. We talked about it on our visit. Your boys are lucky to have you and L as their advocates.