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):
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Facilitated Communication: up close and personal

Time for my promised close, critical look at specific instances of facilitated communication—FC for short.

But first, a preliminary note.  In being critical in what is an extremely sensitive area, I don’t want to reveal names of kids and parents. I’ll provide links to material that’s been made publicly available–stuff posted on the Internet, mostly by or in collaboration with family members. But in what I write here, I’ll be avoiding names or abbreviating them.

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Why is Facilitated Communication making a comeback? (Part II–a very bleak post)

It’s now time, in this series on autism, neurodiversity, and language learning, to return to two key criteria for autism in the most recent DSM (the DSM V), each of them tapping into deficits in what’s called Joint Attention:

  • Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
  • Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

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