In the last 24 hours, I’ve participated in two different but intersecting discussions on Twitter—one on phonics, the other on autism. Their point of intersection: the question of oral vs. written language.
The phonics discussion was one I couldn’t help jumping into. A distinguished education professor and specialist in reading instruction dismissed someone’s linguistically accurate observations about consonant-vowel-consonant (CVC) patterns by telling them they should take a class in linguistics. I’ve taken many classes in linguistics, so I piped in as follows:
I’ve just finished reading In a Different Key, a book by John Donvan and Caren Zucker subtitled “The Story of Autism.” It’s the most comprehensive, in-depth, even-handed history of autism I’ve read so far.
Published in 2016, the book begins with the first formal diagnosis—back in 1942, Leo Kanner’s “Case 1”—and proceeds through the various wrong-headed theories (“refrigerator mothers”; normal children “locked inside”; post-natal, vaccine-induced “brain injuries”) and wrong-headed approaches (institutionalization; psychotherapy; behavioral modification through cattle prods); to the panic about a growing autism epidemic as the diagnostic criteria shift and as the reported rates increase from an original estimate of 1 in 4,000 to a rate of 1 in 66 at the time of publication. (We’re now at 1 in 59).
The book ends with two recent developments. Continue reading
I’m finally coming up for air after an intensive autism project funded by National Science Foundation. We had seven weeks to conduct at least 100 interviews–mostly with parents of autistic kids and with autism-focused teachers and therapists. The unrelenting stress of those seven weeks (which also involved weekly homework, lectures, and presentations, two trips to Boston, and a boot-camp ethos throughout) reminded me of the unrelenting stress I felt during the most difficult eras of J’s childhood.
And the difficulty I found in tracking down autism parents made me wonder whether autism is quite the epidemic people say it is.
My specific target was parents of children somewhere in the middle of the autism spectrum: kids who can recognize and produce at least a few spoken and written words, but who continue to struggle at least to some extent in putting those words together into grammatical phrases and sentences.
In the end, I spoke with about 40 parents, just barely enough to meet our weekly quotas and not get yelled at. Actually, the fear of being yelled at—funny how that doesn’t fade away with age!—was ultimately a good thing, as it resulted in some really interesting interviews.
Here are my main takeaways (some of these will be familiar to anyone familiar with autism):
re: shared attention and GrammarTrainer I had a funny experience a few days ago. Funny and wonderful.
I had gone to Andrew’s day program and logged him onto a new GrammarTrainer session. Then, when all seemed to be going well, I started reading my phone instead of looking at the laptop Andrew was using. (In theory, he’s supposed to use the program independently….)
And Andrew didn’t like it !
He poked me, protested (“Huh!“), and jabbed his pointer finger at the laptop screen. I thought he must have been having trouble with a question, but he wasn’t. He just wanted me to look at the same thing he was looking at.
I don’t think that’s ever happened before.
Syntax is not so easy
Looking at the same thing at the same time with Andrew
Looking at the same thing at the same time with Andrew, part 2
This may be a post only parents of autistic children and adults can really ‘get,’ but here goes.
One of the most painful aspects of autism for the parent (and no doubt for siblings and others close to the child) is the profound deficit in shared attention:
Joint [shared] attention occurs when two people share interest in an object or event and there is understanding between the two people that they are both interested in the same object or event.
Joint attention should emerge around 9 months of age and be very well-established by 18 months of age.
A 9-month old baby points. (Right? It’s been a while.)
A 9-month old baby points, and, when you point, s/he follows your finger to see what it is you’re pointing at. Parent and child look at the same thing at the same time, and they do so on purpose because people share.
But autistic babies don’t point. At least, neither of my autistic children pointed. Nor did they react when I pointed.