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):
In my previous post I laid out the core tenets of a group of people who identify as autistic and affiliate themselves with a movement called “Neurodiversity.”
So what does a group of highly verbal people who identify as autistic have to do with facilitated communication—and why, as I suggested in an earlier post, do they support it?
The group of highly verbal people I have in mind identify not only as autistic, but also as members of a movement called “Neurodiversity.”
While this movement proclaims to be primarily about advocating for full acceptance of the gamut of neurological differences that constitute humanity, it has, over the years, narrowed down to a much more rigid ethos—an ethos that I’ve learned a fair amount about in a half-year of sometimes heated interactions on Twitter.
To appreciate why today’s hardcore neo-Neurodiversity advocates support facilitated communication, we need to begin by deconstructing this ethos. Here are its central claims:
In my last post, I mentioned several constituencies that have kept Facilitated Communication, for all its definitive debunkings, alive and well: hopeful parents, duped therapists, and well-intentioned philanthropists enriching unscrupulous institutes and their various gurus. I then ended with a teaser about a fourth constituency that has helped enable what is actually a major FC comeback: highly verbal adults who identify as autistic. But before I address their dogs in this fight, I need to showcase one more player that, until emailing with psychology professor James Todd, I’d kind of forgotten about: namely, academia.