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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Monotropism, tunnel vision, and some small grains of truth in those pro-FC arguments

As with many out-there belief systems, those espoused by proponents of Facilitated Communication contain some grains of truth.

For example, observations of motor clumsiness in autism date back to Leo Kanner and Hans Asperger—but they don’t add up to the kind of mind-body disconnect that FC proponents claim justifies FC. Similarly, the infrequent initiations of social interaction seen in individuals with autism do not add up to the kind of generalized initiation disorder that Rapid Prompting Method proponents claim justifies the RPM version of FC.

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Strange things about Strange Son

I first became aware of Strange Son when I was trying to publish my own autism memoir. My agent was told that the reason we weren’t getting bites was that an autism memoir was about to come out that would dwarf all the others. The author was a huge name in autism–Portia Iversen, the co-founder of Cure Autism Now–and the book was a miracle cure memoir. Only later did I find out what the miracle was; for now, it was looking like all that publishers wanted in terms of autism memoirs were memoirs of this particular sub-subgenre (cf. Let Me Hear Your Voice and Unraveling the Mystery of Autism and Pervasive Developmental Disorder, recounting full recoveries, respectively, through ABA therapies and gluten-free diets). My agent advised me to retool my material into a non-autism non-memoir, and the result was Raising a Left-Brain Child in a Right-Brain World. The irony was that this title, chosen by my publisher, made my book sound more pseudoscientific than the miraculous autism memoirs it was distancing itself from.1

Reading Strange Son for the first time this week, I learned that there’s one additional way in which Iversen’s book connects to my own projects. It was shortly after its publication that my then-collaborator and I were awarded a Cure Autism Now Innovative Technology grant to do a pilot study of my software program. And it is shortly into Strange Son that we meet, at a Cure Autism Now Innovative Technology conference, one of the book’s protagonists. The person in question is Tito Mukhopadhyay, and, brought over to the U.S. from India via Iversen and CAN, he’s making his first appearance—as the conference’s keynote speaker.

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Speechless about Speechless

The original source of US-based facilitated communication is the Australia-based Rosemary Crossley. In 1989, Douglas Biklen visited her clinic, and was so impressed by FC’s efficacy there that he took it back to upstate New York. It’s therefore not surprising to encounter in Crossley’s book Speechless: Facilitating Communication for People Without Voices, published in 1997, many of the justifications for FC that we continue to hear to this day.

Speechless recounts Crossley’s work facilitating the communication by typing of an assortment of individuals with minimal speaking skills, from victims of traumatic brain injury, encephalitis, and untreated PKU, to individuals with cerebral palsy, Down Syndrome, Rett Syndrome, and autism. While some of these people type via head pointers (pointing rods mounted on head bands), most use an extended index finger, and most require support at the wrist, forearm, elbow, shoulder or sleeve while typing.

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Talking back to Talking Back to Autism

You’ve got to wonder how many of the enthusiastic reviewers of “A Mother’s Courage: Talking Back to Autism”—in the NYTimes, in the LA Times, and on NPR—actually watched, through anything but tear-blurred eyes, the final scenes of the movie. You’ve got to wonder the same thing about the various autism experts who appear in the movie: David G. Amaral, PhD, Simon Baron-Cohen, PhD, Geraldine Dawson, Phd, and Catherine Lord, PhD. (There’s also a clip of Dr. Sally Rogers, but this was lifted from a 60 Minutes episode; she had no role in this movie).

First released in 2009 as “The Sunshine Boy”, and later as an HBO documentary, “A Mother’s Courage” tips its hand within its first ten minutes. On a pilgrimage from Iceland to the US to learn more about autism, the mother in question, Margret Dagmar Ericsdottir, is shown seated on an airplane with a copy of Portia Iversen’s Strange Son in her lap. Strange Son (say tuned for a full review) recounts Iversen’s efforts to bring Soma Mukhopadhyay and her Rapid Prompting Method from India to the US to unlock Iversen’s son and other non-speaking American autistics. Having foreshadowed the miracles to come, the film takes a long and winding road, making stops at the offices of the autism experts, Temple Grandin’s ranch, the homes of several autism families, and an ABA clinic, with detours through the countryside and rough shores of Iceland with Ericsdottir’s family, including her two non-autistic older sons and the severely autistic Keli. Then the film reaches its destination and devotes its final act to Soma.

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The myths of Autism and the Myth of the Person Alone

Today’s episode of my series of reviews of pro-FC books and movies looks back to 2005 and a book called Autism and the Myth of the Person Alone. Published by NYU Press and authored by Douglas Biklen, best known for bringing Facilitated Communication to the US in the early 1990s, this book attempts to challenge the prevailing scientific understanding of autism. Its evidence? Testimonials about autism that purportedly come from autistic individuals. 

Purportedly is the key word here: all of these individuals communicate by typing, and though Biklen claims that all but one of them have learned to type (or, in some instances, write) independently, all require a helper to sit next to them while they do so. As Biklen puts it, “I found that the contributors could converse fluently with me, but only if their mothers or other trusted, familiar persons in whom they felt confident were nearby.” Each person, furthermore, underwent years of active facilitation in which these trusted, familiar persons maintained physical contact with them during typing. 

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Can the captain of an airplane teach 5th grade?

One thing led to another, and we found ourselves, mid-January, on a flight to Aruba.

The announcements began not long after we boarded.

“When you purchased your tickets with Jet Blue, you agreed to a contract stating that you would wear a mask on the airplane. If something has changed between that time and now, and you feel you are no longer able to wear a mask, please contact the stewardess and she will help you make other travel arrangements.”

Mask contract?

?

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