Why do some autism experts fall for Facilitated Communication?

Watching autism neurologist Margaret Bauman being taken in by Sue Rubin’s facilitated communication in Autism is a World got me thinking about other neurologists who have suffered similar fates. One in particular has long stood out to me: Mike Merzernich. After studying Tito, son of Soma, founder of the Rapid Prompting Method variant of FC, Merzenich has concluded that “Tito is for real,” and “I think there could be thousands, maybe tens of thousands of Titos out there.”

How can people who should know better about the neurology of autism have been so deluded? Doesn’t their own brain research conflict with the underlying assumptions of FC—namely, the assumption that autism is primarily a movement disorder?

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Clever Stella (the Dog of Ms. Hunger)

Since its release early this month, How Stella Learned to Talk has already garnered more 5-star reviews than another book released last month by the same publisher (William Morrow). That other book would be the pro-FC I Have Been Buried Under Years of Dust. Just a few weeks out, Stella has already broken 1000 in its Amazon sales rankings, a milestone that Dust hasn’t come close to.

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Diagnostic Grammar Test

SentenceWeaver’s Diagnostic Grammar Test is ready for beta-testing. The text-input version is here:

http://autism-language-therapies.com/DiagnosticTest/test_login.html

And the speech-input version, which runs only in Chrome and requires you to enable your microphone, is here:

https://autism-language-therapies.com/ORAL_DiagnosticTest/test_login.html

The point of the test is to detect difficulties in those areas of grammar that come naturally to most native English speakers but can pose challenges to individuals with autism and to non-native English speakers.

Still, it’s possible for native speakers to take this test and make mistakes: as you’ll see if you try it out, all it takes is a lapse in concentration!

Unlike SentenceWeaver’s teaching tool, the diagnostic tool doesn’t give you corrective feedback. However, since it needs to elicit particular words, phrases, or structures in order to assess particular grammar and syntax skills, it will sometimes ask you to reword your answer.

You’re welcome to try it out on yourself on your kids, and you can sign in using whatever name you’d like. Feedback appreciated!

Colonotomy!

I just found out that a copy editor removed a colon from a key sentence in the critique I just published of Jaswal et al’s pro-FC eye-tracking study. The resulting sentence is incoherent:

Indeed, it would be quite strange if there were the ability to answer open-ended questions, or, more generally, to participate in a communicative exchange, is independent of linguistic medium (speaking, writing, typing), and is limited only by one’s ability to function in that medium (to pronounce words, to write letters and spell words, to type and spell words) and by one’s general communicative competence.

I’ll leave it as an exercise to the interested reader to figure out where the colon goes.

Hint: here is the immediately preceding sentence:

There is, in fact, no empirically established or diagnostically categorized language disorder that combines extant oral skills with conversation skills that only emerge during hunt-and-peck typing.

Word to the wise: when reviewing proofs, make sure to look for tiny strike-through marks through punctuation marks whose occasionally crucial function your copy editor may have somehow overlooked.

I Have Been Buried Under Years of Autism Miracle Stories

Back when my son was first diagnosed, they were miracle stories about ABA therapy, the gluten-free diet, Floor Time, and chelation. But at some point after the turn of the 21st century the narrative shifted—and now it’s all about FC. Hard on the heels of Handley’s Underestimated: An Autism Miracle, which came out last month, we have Gilpeer’s I Have Been Buried Under Years and Dust (her FCed daughter is credited as co-author), which came out last week. Gilpeer, till now a relative unknown in the world of autism advocacy, has landed a bigger publisher than Handley (William Morrow), and gushing reviews in both the Washington Post and NPR.

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Underestimated: How Vaccines Create Geniuses and How Letterboards Unlock Them

The first autism cure memoir of 2021 has just come out: J.B. Handley’s Underestimated: an Autism Miracle. Handley is the author of the 2018 anti-vaccine book How to End the Autism Epidemic and, back in 2005, the co-founder (with his wife) of Generation Rescue, an organization that, besides blaming childhood vaccinations for autism, has promoted scientifically discredited treatments like gluten-free diets, megavitamins, and hyperbaric oxygen therapy.

But Handley’s 2021 miracle cure book isn’t about the gluten-free diet, or the vitamin B-12 doses, or the ten fecal microbial transplants, or the “more than 100 ‘dives’” into hyperbaric oxygen chambers to which Handley has subjected his autistic, non-speaking son Jamison.

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Lit Crit Meets “Autism”: Transgressing the boundaries with some help from FC

Ralph Savarese’s follow up to Reasonable People: A Memoir of Autism and Adoption is the even more modestly titled See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Also common to both books is that much of the content derives from facilitated communication. In Reasonable People, the facilitated individual is Savarese’s adopted son, Deej; in See It Feelingly, Deej is joined by two others who communicate via FC: Tito Mukhopadhyay and Jamie Burke. Three independent communicators—people who are able to produce messages without a designated helper sitting next to them and prompting them—also make appearances: Dora Raymaker, Eugenie Belkin, and Temple Grandin.

Like Reasonable People, See it Feelingly seeks to challenge what Savarese alleges to be the dominant paradigm of autism. As the book’s publisher, Duke University Press, explains:

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Another prestigious institution gets on the “Typing to Communicate” game

Beyond the University of Virginia (via Vikram Jaswal and his Eye Tracking Study), Cambridge University is also hard at work validating the latest forms of facilitated communication. I’m thinking, specifically, of Alex Woolgar, whose work (as yet unpublished) is described in detail on the International Association of Spelling as Communication (I-ASC) website.

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A small but vocal group of individuals

They are an amazing group.  Some are poets, novelists, or visual artists.  Some have graduated from or are currently enrolled at prestigious colleges and universities such as UC Berkeley, Tulane, Oberlin and Harvard, among many others.  Most are advocates, some professionally, others as just something they do on the side to give back to the community.  Some have written op ed pieces in the Wall Street Journal, others have given presentations to the United Nations.  Some are active in non-profit advocacy groups or lead student-run organizations on campuses.  Some have shared their perspectives with medical providers, educators and architects to help these professionals understand how to better serve nonspeaking people.

https://i-asc.org/an-open-letter-to-my-sons-skeptics/

And all of them compose these perspectives, advocacy statements, op ed pieces, UN presentations, novels, and poems via some form of facilitated communication. Their wrists, arms, or shoulders are held, or a letterboard is held up to them, or, at the very least, a “communication partner” sits or stands next to them and prompts them. One set of eyes is glued to the keyboard; the other set of eyes may or may not be, but an extended index finger that belongs to those eyes hovers over the letters. The moment the communication partners leave the room, all that sophisticated communication grinds to a halt. This, in a nutshell, is the problem.

Some see it differently:

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