Small miracles in deafness and autism

I’m overdue for an “autism diaries” update–as a few recent developments with J have reminded me. At a time when the world as a whole seems so profoundly screwed up, it’s nice to reflect on how far this one little guy (now 6 foot 5) has come.

J was born profoundly deaf–so deaf that a brainstem test revealed no auditory awareness whatsoever. As this news took shape (literally, in the flattening lines of an EEG screen), we had no idea about cochlear implants. As far as we knew, J faced a future of profound silence.

That vision was soon moderated by cochlear implant pamphlets and phone calls to the parents of implanted toddlers. But just how well an implant would work for J in particular remained disconcertingly uncertain. There was, in the late 1990s, simply not enough data for firm predictions.

Some three months after J was implanted, I played a chord on the piano while he was facing away from me, standing on a chair, engaged in what we thought was a passing hobby: turning on and off a ceiling fan. I played the chord and he promptly turned around and looked right at me.

But why, the speech therapist wondered a few months later, did he remain so oblivious to speech? Enter diagnosis #2.

J as it turned out, was not just “profoundly” deaf, but “moderately” autistic. Not only that, but “moderate,” in the context of autism, was pretty bad.  Unlike the “moderate” hearing loss we’d initially hoped for way back when, “moderate” autism (or so we were told) meant something much more debilitating: some language, minimal “splinter” skills, a lifetime of dependence.

Fast forward 19 years and, after several years of GrammarTrainer, an intense regimen of schooling (mostly in regular classes) and one-on-one tutoring by a variety of creative and talented lay people (and his parents), together with multiple-times-per-week outings all over the city and state, J is, according to two recent and thorough psychological exams, ….still moderately autistic.

But he’s also slowly making his way through college, majoring in computer science (and/or math). Though he lives at home, he independently gets himself to class every day, keeps track of assignments, exams, and schedule changes, meets with professors or TAs as needed, turns in his work, and participates in class and extra-curricular activities.

He’s even done some in-class presentations–and done OK on them. His grades aren’t perfect, and there’s nearly always a class or two that doesn’t work out the first time around and must be dropped at the last minute. But he’s managed to complete the English and Communications requirements, and has done well in two other courses you’d think would be huge struggles.

The first was linguistics. Assignments for this class included phonetic transcriptions of spoken English, and I doubted whether our profoundly deaf child could handle all the acoustic details. Would he hear the subtle air puff that accompanies the “p”-sound, but only when it occurs at the beginning of the word? Would he hear the difference between the “p” in “pat” vs. “spat”? I watched with amazement as J effortlessly completed these transcriptions, only then realizing how much of a miracle the cochlear implant really is:

spat [spæt]
pat [phæt]
potato [pəthéjtow]

The second course (still in progress) is psychology. You’d think a subject like this–with so much of its focus on emotions and social dynamics–would be particularly out of reach for a student with moderate autism. How accessible could concepts like oral fixation, or super-ego, or collective unconscious, or peer pressure, or social anxiety disorder, possible be?

As it turns out, there are two moderating factors. First, to the extent that psychology analyzes concepts that most of us have some intuitive understanding of, it makes those concepts more accessible to those who don’t. Second, a lot of psychology involves more accessible topics like neurology, cognition, and learning–some of which really resonate with J. Not surprisingly, he particularly enjoyed the chapter on cognitive illusions.

Still, it’s amazing to me to see (once I’ve laboriously worked through the textbook’s explanations with him) how quickly J grasps and generalizes concepts like operant and classical conditioning.

Just for the heck of it, I brought up this last topic in a recent exchange of text messages. I had headed out for the evening, having told J (when asked) that there would be no ceiling fans where I was going. A few hours later, he texted:

Where are you

?

I sent him this picture of the ceiling of my current location:

J’s response:

Are you blind?

Me, a bit confused:

Are you deaf?

J:

I thought you said no fans

Were there fans in the picture? I’d somehow not noticed them. I looked up and scrutinized the ceiling and yes, sure enough, camouflaged among the black ceiling lights hanging from the black ceiling were some black ceiling fans.

Me (a bit sheepishly):

Well, they’re not moving

And they’re not going to move.

J:

Ok but how many fans does the restaurant have?

?

Me:

3.

All off.

And they will stay off.

I then decided it was my turn:

Now answer my question:

Are fans

a. An unconditioned response
b. A conditioned response
c. An unconditioned stimulus.
d. A conditioned stimulus.

?

J (a short moment later):

d.

Me:

Conditional on what?

J:

I don’t remember.

It was years ago

It sure was.

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