After 100+ autism interviews, it’s time to debrief

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):

  • Many parents of these “middle of the spectrum” children report that their kids communicate primarily, preferentially, and/or at greatest length through echolalia: they parrot back word sequences they’ve heard from others (from parents, from teachers, from superheroes, from YouTube videos) rather than constructing, from scratch, sentences of their own. Many don’t enjoy expressing themselves verbally, keeping their words to a minimum and their utterances to immediate here-and-now needs. As a result, it’s hard to tell how much language they’ve truly mastered. Past tense? Future conditionals? Who knows?
  • Parents are making gigantic sacrifices, spending thousands, and sometimes tens of thousands of dollars per year on therapeutic interventions. Many suspend or abandon their careers to assist in the implementation of these therapies—often serving as therapists themselves.
  • Many are desperate, reporting that they haven’t seen clear or sufficient benefits from any of the many therapies they’ve tried. A common refrain: “I just want my child to talk.”
  • Three out of the forty have resorted to Facilitated Communication or Rapid Prompting, and one more is planning to do so if things didn’t turn around soon. These parents seem either unaware of, or unwilling to accept, the overwhelming evidence that such approaches are bogus. (And in accordance with the NSF’s interview guidelines, I kept my mouth shut).
  • Each of these three parents told me about how their child went from being completely nonverbal to writing blogs and poetry and/or attending college classes. (And I wondered, yet again, how I would handle the likely plagiarism if a “facilitated” student were to take one of my classes).
  • Contrasting with these parents is another handful whose kids have gone from nonverbal to independently fluent–without any communicative “facilitation” and without any particular therapy being obviously responsible. Perhaps these kids would have become fluent regardless and were just developmentally behind schedule?
  • Many non-fluent autistic kids are using high-tech assistive communication software—most commonly, Proloquo2Go, Dynavox, TouchChat, and LAMP. These programs can now be downloaded onto iPads.
  • But there’s a cost to using iPads as assistive communication devices (or as platforms for learning apps): many parents told me that their children are obsessed with YouTube videos. Typically quite handy with high-tech devices, these kids constantly navigate away from the tools they’re supposed to be using over to YouTube. Parents can lock the devices so that YouTube doesn’t come up, but this, they report, often provokes meltdowns—and the destruction of iPads through hurling and smashing.

Turning, now, to schools:

  • In classrooms and clinics, the high-tech assistive communication software is often considered a teaching tool. (And I wonder whether it’s reducing the urgency of more effective forms of language remediation.)
  • Out of the half-dozen private autism schools we visited, one uses Rapid Prompting (among other more reputable methods), for which all of its teachers have received special training.
  • Many of the public schools we visited are victims of a more subtle form of educational pseudoscience/wishful thinking: the notion that all students, regardless of special needs, can attain state-imposed learning goals—and can do so on the same schedule as their peers. Thus, rather than tailoring all lessons and activities to the needs of their students, autistic support teachers are, to some extent, “going through the motions”, putting their students through the standard language arts, math, social studies and science curricula and the standard assessments—whether or not these kids are actually literate, numerate, or anywhere near being able to comprehend such concepts as civil war or photosynthesis.
  • Some autism support teachers report having significant numbers of students that they don’t think are actually autistic. They tell me that parents prefer an autism diagnosis to that of an intellectual disability, and/or that an autism diagnosis gets you better services and classroom placements.

In a future post, I’ll explore the connections between Facilitated Communication and other forms of educational pseudoscience—something that Catherine and I will be addressing in a talk we’ll be giving in Philly this fall. But first I think I’ll write a review of In A Different Key…stay tuned.

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