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.
There are now enough FC miracle stories out there for some common themes to emerge. Autism is, unlike what the scientists say, some sort of motor disorder or mind-body disconnect that locks the child in; while the child may be able to pronounce a few words, the parents always knew there was more in there. When FC unlocks the child, it also unlocks perfect spelling, grammatically well-formed sentences, sophisticated vocabulary, and a repository of worldly knowledge that indicates that the child, during all their many years of not communicating, was nevertheless attending to everything. Throughout the narrative, we find assurances that they are in no way “intellectually disabled”, but rather “smart” or even “brilliant.” Naturally, much of the evidence for this comes from the sophisticated content of their FCed messages.
In the case of Gilpeer’s daughter, however, some of signs of intelligence emerged pre-FC. From a young age, she learned quickly how to put things away, match clothes, and set the table. She apparently completed a 500-piece Spice Girls jigsaw puzzle at the age of five. These non-verbal skills, indeed, fit right into the typical IQ profile for autism: much higher performance IQ than verbal IQ, with particular strength in patterns and routines. There are completely non-verbal children who readily sort silverware, solve complex puzzles, or divide numbers using long division.
What doesn’t fit the cognitive profile of autism are the sudden literacy skills that emerge only via FC. Nor does the sudden mastery of spelling and expressive syntax fit what we know about how children in general acquire language and literacy. Nor, finally, does the command of figurative language fit what’s typical even in the highest functioning individuals on the spectrum who communicate independently. As Gilpeer notes in reference to one of her daughter’s poems:
I’d seen autistic types before and they tended to give primarily information and data—what they like to eat, color or clothes preferences, dislikes—and they always presented the material in a very literal way, not with this kind of deep self-awareness couple with expressive prose. Even in my work as an advocate for special needs individuals in which I’d encountered many types, I’d never seen the kind of imaginative and evocative writing come from someone who appeared to have profound limitations.
This is just one example of something that Gilpeer finds marvelous but that should instead raise red flags. Here’s another:
At one of their sessions, Lindsey asked Emily if she could go anywhere in the world, where would she go. Emily was full of ideas and dreams, but the biggest one, the one she wrote about most frequently, was to visit London. We were astounded as she told us details of the city. She pictured Big Ben and the soldiers with enormous hats, she knew about the River Thames, and that tall red buses filled the streets. She was fascinated by Lady Di and knew all about her and her tragic death. We didn’t know where all this information had come from. We’d never told her anything about London. She told us she’d learned about it from watching the news; she’d been five at the time that Lady Di died.
It’s not that Gilpeer is immune to skepticism. While she shows no hint of it until after she finally gets her daughter started on FC—a process that takes many years—she does initially wonder, following the FC breakthrough, whether Lindsey “had inadvertently guided Emily into writing words that were not really hers”; whether she was “unconsciously helping her.”
Rather, what ultimately squelches Gilpeer’s skepticism is when Emily’s doctor switches her prescription from Valium to Xanax and asks her about the difference between the two. Emily responds, through FC, that “The new medication doesn’t last as long. And I find myself more irritable and you know, it doesn’t work for me.” The doctor confirms that it’s true that Xanax doesn’t last as long and is less soothing than valium–facts that, Gilpeer assures us, Lindsey couldn’t have known. But these are public facts that Lindsey could have known, or she could have deduced them from changes she picked up on--however subconsciously--in Emily's mood.
And what ultimately squelches Gilpeer’s husband’s skepticism is when Lindsey asks him, after telling him about how Emily typed about attending Shabbat in the Park, “What’s Shabbat?” Gilpeer quotes her husband as stating, “I knew, then, that the words could only be Emily’s. Lindsey didn’t even know what Shabbat was.” Surprising as it is that she didn’t “even know,” perhaps she actually did.
Other red flags are described but not appreciated as such. One is the fact that Emily “doesn’t pick up an iPad and start typing on her own.” As with so many facilitated kids (and unlike kids who use communication devices independently), only the facilitator seems motivated enough to pick up the device and get the communication started. Gilpeer’s take is that Emily is “not an initiator.” (Earlier in the book she blames Emily’s early years of intensive ABA therapy for stifling her verbal initiation).
Another red flag is facilitator dependency. First, only Lindsey is able to facilitate typing; then Marta, but the typing is “not as smooth.” But when Gilpeer herself tries to facilitate, “Emily simply responded by typing the last word I spoke, nothing more. No flowing, magical sentences like she wrote with Lindsey. No lyricism.” Gilpeer assumes that the problem is that she’s not asking interesting enough questions. When her husband, who “was much better about making up interesting questions” tries, Emily types out more words, but “her diction was garbled—Dad it little well coming calm my came—not the straightforward and expressive answers she usually gave to Lindsey.” The minute the experienced facilitator take over—in this case it’s Darlene Hanson (the facilitator of that famous FCer, Sue Rubin)—“Emily was discerning and clear in her responses.”
As for Emily’s parents: “our success has been, and continues to be, very limited. She’ll sometimes give us a sentence of two, but they’re never the detailed writings she creates with others. We continue to try”; “We tried with Emily again and again, but her ability to type with me and Tom didn’t change.” This, despite the fact that Emily claims, through FC, to want to type with her parents. “Parents are just the hardest people for individuals to type with, the emotionality of it,” Darlene tells Gilpeer. (Tell that to Emily and Ralph Savarese, the adoptive parents, and primary facilitators, of that famous FCer, Deej.)
While ignoring all these red flags, Gilpeer does emphasize that, “given all the controversies surrounding FC, I needed to be sure.” But at no point does she even mention, let alone explore, the only sure way to be sure: blind the facilitator. Why not blind Lindsey (or Marta, or Darlene)—either to the questions being asked of Emily, or, literally, with a blindfold while Emily types? In Gilpeer’s world, such options don’t appear to exist.
Not that Gilpeer is unaware of the long history of authorship controversies surrounding FC. But, citing the ICI (Syracuse University’s Institute on Communication and Inclusion, formally known as the Facilitated Communication Institute), she suggests that FC’s poor reputation is a result of the “hand over hand” method which, she claims, has been eliminated from current practice; a handful of scandals including the Stubblefield case; and finally the fact that, as she concedes, it doesn’t work for everyone. Gilpeer makes no mention of the most compelling case against FC: its failure to withstand rigorous testing via those pesky double blind message passing tests. Instead, she criticizes the American Speech Language and Hearing Association (ASHA) for its position against FC and for the “civil right violations” that this will “almost certainly lead to.”
Gilpeer reassures us that some universities (besides Syracuse, she cites the University of Kansas and the University of New Hampshire) “continue to research FC and consider it a legitimate field of study.” She doesn’t mention that all sorts of people at all sorts of institutions have done legitimate research on FC—research that has soundly discredited it. Finally—no pro-FC piece written since May, 2020 would be complete without this—she cites Jaswal et al.’s infamous eye-tracking study (to her credit, unlike Handley, Gilpeer gets the name of the publisher right: Scientific Reports and not “the prestigious journal Nature”).
Gilpeer does take on other questions about FC: for example the oft-asked question about how FCed individuals are able to play video games without any facilitation but still need “support” and “physical proximity” when they type. This, she explains, is because of the “very neurological and sensory challenges that often characterize individuals with autism.” She declines to elaborate further. I can’t help but be reminded of the “explanations” that some of Handley’s followers have offered about how someone can be incapable of picking up a desired letterboard but capable of pointing to a desired letter.
Another baffler: why there is never any exploration of authentic alternative communication methods? Gilpeer claims that eventually “FC was the only therapy we had not exhausted.” In the next breath she conflates facilitated communication with augmentative and alternative communication, stating, falsely (and again later in the book), that “FC is a form of AAC”. AAC, of course, includes not only sign language (which Gilpeer mentions), but also all manner of high and low-tech word/icon/picture communication devices (which she omits), all of which are intended to be used independently—no facilitators involved. Whether Emily was given the opportunity to try any form of AAC—and if not, why not—remains a complete mystery.
Of course, once the FC breakthrough is achieved, it’s hard to walk it back. Arguments become circular: we know it works because she tells us so; we know she was locked inside, because… she tells us so. And, most importantly, we now know what it’s like to be autistic: “Reading her words, particularly those giving us insight into what it’s like to be autistic, was astounding.”
A better word might be alarming.
